Warrior of the Month
Our Warrior of the Month Program aims to recognize the bravery and strength of anyone in our community fighting a health battle. One warrior is showcased each month and their story is published right here on our site, as well as shared on our social channels. Nominate yourself or a warrior you know to be featured!
Robyn is our January Warrior of the Month!
Robyn is a warrior with epilepsy, diagnosed in January of 2016. She says she fights like a warrior every single day. When she was diagnosed, Robyn asked, “Why me?”. She then realized “Why NOT me?” because she feels she can turn a bad thing into helping others that are going through something similar.
She uses her Instagram, @robyn_the_epileptic_ravenclaw, to spread awareness about her epilepsy and share her story. She wants to show others that they aren’t alone in this fight even if it starts to feel like it. Robyn says that although epilepsy, like many chronic illnesses, can be unpredictable and scary, you shouldn’t forget that there are people out there that are cheering you on!
She believes that even with epilepsy, you can still do something incredible and you should leave behind something bigger than yourself.
To read more about Robyn and her story, follow her Instagram @robyn_the_epileptic_ravenclaw
November 2022: Michael
Our Warrior of the Month for November is Michael!!
Michael goes by @cfssuperhero on Instagram and is from the Gold Coast in Australia. He is a writer and advocate for people with chronic illness and disabilities.
Since the age of 15, he has lived with Myalgia Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Postural Tachycardia Syndrome (POTS). He woke up one day exhausted, which seemed like it came out of nowhere. It got worse throughout the day to the point where he was only able to lay still.
For many years during that time, Michael was able to pretend to be normal to the outside world. While he was home and in the back rooms at work, he experienced pain and would collapse in areas he couldn’t be seen.
7 years ago, Michael became very ill and his condition turned severe. This made him no longer able to hide the effects it was causing on his body. He completely lost the ability to walk, was bedridden, unable to shower, chew, or even move his limbs. After this happened, he decided to make his comic and social media page.
Michael now has around 14,000 followers and is advocating for people that are going through similar situations. His page is filled with posts similar to blog posts. He also shares uplifting posts and his humorous comics. His comics have helped him connect with many beautiful warriors all over the world and he is so grateful to know so many.
This year Michael was able to turn these comics from his Instagram into a book! The book is available on Amazon and called “Chronic Fatigue Superhero.”
He is still living with his condition severely, but he continues to see so much hope and beauty in life, even if it’s something harder to spot. He is continuing each day by sharing, teaching, and learning from those around him. Michael hopes that one day we can all find a way through and see how humanity was always meant to be together.
September 2022: Natalie
Our September Warrior of the Month is Natalie!
In August of 2021, Natalie was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) after being sick with COVID. Like other forms of dysautonomia, POTS is a disorder that affects the nervous system. As such, it throws off normal autonomic body functions such as heart rate, breathing, blood pressure, sweating, digestion, temperature regulation, and more.
Natalie’s chronic illness journey started when she was training for a half marathon. She was out for a run and began to feel like she was going to pass out, followed by sharp pains in her chest. This is when she knew something was wrong; this was not normal for her. Next came extreme fatigue, heart palpitations, exercise intolerance, and lots of pre-syncope symptoms. Pre-syncope is when a person feels as if they are about to faint. It can include symptoms like
lightheadedness, nausea, and even issues with vision--just to name a few. She was seen by numerous doctors and had several Emergency Room visits. All the while, Natalie was consistently told that it was anxiety and she needed to go on medication. Being disregarded by health professionals led to a brief period of depression, and falsely believing that it was all in her head. But Natalie never stopped fighting, and knew that if she found the right doctor, they would give her the medical attention she needed.
For many months, Natalie went through frustration, exhaustion, and sadness. While days can still look like this, she chooses to take a more positive approach. This journey made her realize that chronic illness made her become a new, even better person. She’s that much more aware of how grateful she is for the small things in life, as well as the people in it. But this perspective wasn’t something that happened overnight. Instead, Natalie says it takes a lot of time, therapy, and practice to gain (and maintain) this outlook.
Exercising, salt, hydration, and listening to her body has helped her make progress this past year. She puts in enormous amounts of effort to be where she is today, but also knows that she still has a long way to go. Natalie thanks her friends and family for allowing her to have her bad days, and for being there to cheer her on during good days.
Natalie's advice for anyone struggling with chronic illness is to never stop searching for a medical professional that will *listen* to you. And when you do, always be the advocate for yourself and others. To her, it’s important to understand that you are NOT your illness and not to allow it to take the good things away from you—remember to fight back! She would also like people with POTS, specifically, to know that physical therapy truly helped her. Working with a professional to slowly build back endurance and muscle over time allowed her to be where she is now. Natalie says that it's hard, and some days the idea sounds horrible, but continuing to fight is important.
Lastly, Natalie wants our community to remember that it is okay to not be okay. For her, life is currently filled with many emotions and challenges as she tackles her last year of college. But she allows herself to feel her emotions and learn to accept the situations—and encourages other to do so as well. Natalie emphasizes allowing yourself to feel any emotion you want to!
Please feel free to reach out to Natalie if you’d like to discuss POTS, chronic illness, mental health… or just need a new buddy! You are NOT alone! You can follow Natalie on Instagram: @allthepotsibilities
August 2022: Kenzie
Our August Warrior of the Month is Kenzie!
Kenzie has multiple chronic illnesses that she says disable her in several ways. However, she lives on a farm and likes to consider herself a chronically ill cowgirl! On her good days Kenzie gets to take care of animals and work on projects on her family’s property. Her family farm was originally homesteaded in 1863 by her family as one of the first homesteads in their county.
Kenzie has always tried her best to spread awareness about chronic illness. Her journey has been a long and rough path. She said she was rolling hay bales and helping her parents at a young age. This of course came with bumps, bruises, and mud on her just about every day. She started having “growing pains” pretty quickly once she started attending school.
Once she started sports, that’s when things started to progress. She began to have pain in her knees, ankles, hips, shoulders, and wrists. She started in junior league when she was 15 and became team captain the following year along with doing a junior firefighter program but had to take a break due to being diagnosed with fibromyalgia.
Her health suddenly went south fast after her second year of college. She could barely take care of herself, let alone drive to class, weld for four hours, do other school work, and work part time. One day while completing assignments, her psychology instructor mentioned she should look into Ehlers Danlos Syndrome. When she did, it was the first time her life started to make sense to her.
Finally, she got the confirmation that she has hyper-mobile Ehlers Danlos Syndrome. This means she is very bendy, her joints don’t stay in place very well, and she lives with a lot of full body chronic pain. Along with that she deals with IBS, gluten and dairy allergies, anxiety, depression, dysautonomia, complex ptsd, degenerative disc disease, and might be on the autism spectrum with ADHD.
Kenzie says all these experiences were brutal for her, but loves the saying, “the toughest battles are given to the strongest warriors”, and has really taken it to heart. It has gotten her through some of the worst times in her life, and helped her build resilience for what else she is meant to do with her life.
You can learn more about Kenzie and her journey on her Instagram @the_chronically_ill_cowgirl
July 2022: Isabella
Our July Warrior of the Month is Isabella.
Isabella is 19 years old and in February 2014 she was diagnosed with Lupus. She says it has been a long journey of questions before then. When she was in preschool, Isabella’s teacher would massage her legs because they were always sore. She had to discontinue dance classes and could no longer participate in miming with her church’s mime team.
Eventually, it became difficult for her to run and
play, to climb stairs, and sunlight/heat exposure would cause her to break out into hives. She went to her pediatrician and was diagnosed with growing pains.
Fast forward to 2014, she visited her pediatrician for an annual check-up and her doctor observed visibly swollen glands below Isabella’s face. The doctor referred her to an ENT who found abnormalities in her blood and referred her to her present pediatric rheumatologist at Levine’s Children’s Hospital. The pediatric rheumatologist ordered many blood tests. At the following visit with him, she was diagnosed with Lupus SLE.
Her whole outlook on life changed when she found out what Lupus actually was. Seeing the words “no cure” left her questioning everything she thought she had figured out in life. She was on her medications and for a while, she felt suffocated. In the years following she learned to manage her chronic illness that had no cure.
Isabella says that experiencing a life-changing illness gave her a greater grace because it just allowed her to change her story and experience the highs and lows while she came out stronger and wiser.
Lupus is an illness that almost broke her. It showed her that although she hit what might be her lowest point, she didn’t give up. She says she is so humbled and thankful to have met so many phenomenal people in the chronic/autoimmune disease community. Being a part of a community is something she considers so empowering and influential. it encouraged her to share her voice and interact with others.
She refused to give up despite being confronted with an unimaginable battle. She had to feel it, grow through it, and let God meet her where she was.
Isabella is entering her sophomore year of college at Wingate University and currently working part-time at a childcare facility as an infant/toddler teacher! She is currently taking the CNA-1 course over the summer at the local community college to help as she prepares for the nursing program at Wingate.
You can learn more about Isabella by following her on Instagram @bellamccray
June 2022: Tayla
Tayla is our June Warrior Of The Month!
Tayla has lived with Congenital Myasthenic Syndrome (CMS)—a rare disorder that had a gradual onset from 17 years old.
She says having a rare disease has profoundly shaped her perspective. She has a whole new meaning to freedom is a privilege and is not necessarily a given thing.
While autonomy over her body has been challenged, she continually seeks to feel safe and at home within her skin. This includes accepting new limits and feeling comfortable asking for help when needed. She has a new relationship with rest and now sees it as essential and productive!
You can follow Tayla on Instagram @taytay.jade
May 2022: Jenna
Jenna is our May Warrior of the Month!!
When Jenna was 11 years old she was diagnosed with psoriasis. The diagnosis came after two girls were braiding her hair and noticed spots on her hairline and neck. She thought it was dandruff, but it eventually took over her entire scalp. Several years later in 11th grade she had her second psoriasis flare after recovering from mononucleosis. However, this time it quickly spread to over 50% of her body. Especially on her back, neck, chest, and face.
She went to the pediatric rheumatologist for the first time to receive some more intense treatment for her psoriasis. After this appointment she left with three more diagnosis of rheumatoid arthritis, scoliosis, and hyper mobility spectrum disorder. Unfortunately, the first medicine she tried made almost no impact on her rheumatoid
arthritis and psoriasis.
During Jenna’s senior year of high school, she was in a battle with her insurance company. They denied her new life medicine nine times. While this battle was happening, her psoriasis began to cause hair loss, bullying at school was getting worse, and she says every day was filled with tears. To make it worse, at the beginning of the pandemic she tested positive with tuberculosis. After 6 months of tuberculosis treatment and her 10th try, insurance finally decided they would cover her new medicine and physical therapy for her arthritis.
Thanks to this life changing medicine, Jenna has been in remission from psoriasis for about a year and a half. But she unfortunately still struggles daily with joint pain and clicking, stiff limbs (especially fingers and knees), bruising, and extreme fatigue. She refuses to let her diagnoses define her in her everyday life and my hopes and dreams for her future.
She is currently in the process of transferring to Auburn University for aerospace engineering and physics. Her hope is to further the future of deep space exploration and aid in making life multi-planetary. She hopes to become an astronaut one day and pave the way for the future generation of women in science. Science is for everyone and should be accessible to all despite race, gender, or disability.
You can follow Jenna on Instagram at @jennatheastronaut or on Tumblr at @photonblasters.
April 2022: Nicole
Our April Warrior of the Month is Nicole!
Nicole is a medical student studying to work with children that have cancer or chronic illnesses! During her first year of medical school, Nicole noticed that she was starting to get dizzy any time she stood up. She was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) and eventually her doctors discovered she had Ehlers Danlos Syndrome (EDS).
Nicole is continuing to study to become a doctor, while living with her conditions. She hopes to become the doctor that will help young patients after other doctors have dismissed them. This is something Nicole says happens often with POTS and EDS.
When she was first diagnosed, Nicole noticed how teens and young adults were often overlooked. She wanted to do something to make them feel special. This is why she started her small business, Potsie Packs Care Packages. Potsie Packs sends care packages to other chronically ill people that apply on their Instagram! The care packages suit ages 10-30. Nicole says “Oftentimes, teens and young adults fighting chronic illnesses and cancer find themselves caught between both too young and too old to receive care packages catered to them. Potsie Packs aims to provide unique gifts and helpful resources to this age group through our care package program. However, most importantly, we aim to make people smile as they go through some of the toughest days of their lives.”
You can follow Potsie Packs on Instagram. Their handle is @potsiepacks.
March 2022: Nic
Our March Warrior of the Month is Nic!
Nic was diagnosed with Transverse Myelitis when he was 12 years old. One day, Nic felt a little sick before school, and by lunchtime he was struggling to walk and needed to be helped into his mom’s car. Nic left to the emergency room and was eventually admitted, from which point it took a few weeks to finally get a diagnosis.
Nic lives to show others that it is more than okay to struggle, mentally and physically, as long as you can ask for help and get up to try another day. He believes no one should be embarrassed of their conditions, those you can see and those that are invisible, and they should be proud of everything they have overcome so far. Although Nic’s conditions are mostly physical and chronic pain related, he also struggles with his mental health (including addiction) as well.
In spite of these struggles, Nic loves to participate in weight training to show others what can be accomplished with perseverance and dedication. “When I was young, my doctors weren’t convinced that I would be able to walk again and I might be in a wheelchair for the rest of my life. In response, I used a cane to exit the hospital a couple months later and now years later I can run on an elliptical machine. I may walk with a visible limp that I struggled to cope with as a child, but I learned to love who I was and appreciate what I was able to accomplish. I even decided to start wearing cool shoes to give the gawkers something nice to look at. My struggles are not the same as everybody else’s but I want everyone reading this to know: I empathize with what you are going through and I believe in your strength to succeed. Love yourself and make yourself proud, because at the end of the day your opinion of you is the only one that matters.”
Nic is pursuing a mechanical engineering career in hopes to contribute to the future of space colonies, but also design smart prosthetics to aid those in need. He wants to see a future in which no one is made to feel unacceptable or less than. He believes in equal access to, and the promotion of, access to STEM in under-served communities including minorities, women, and those with disabilities.
February 2022: Andy
February’s Warrior of the Month is Andy!
Andy has shown symptoms of Ehlers Danlos Syndrome (EDS), a connective tissue disorder, since she was little. However, since her dad’s side of the family is tall always wrote off her pain as normal growing pains despite her being short.
At around 15, Andy had her first allergic reaction during a school field trip. She saw a doctor who told her she was allergic to dairy. Though even after being extra careful she kept having allergic reactions. After about 3 years and 5 doctors, a doctor finally brought up Mast Cell Activation Syndrome (MCAS). A year later she developed and was later diagnosed with gastroparesis. Then Poly-orthostatic Tachycardia Syndrome (POTS) a few months later. While at one of her doctor’s appointments, her doctor noticed she had hypermobile elbows and suggested EDS could be causing the multiple medical
conditions to be present at once also known as comorbidities. Later that summer, she received her official hEDS diagnoses.
Andy has a service dog named Obi Wan that she originally got to be her dairy alert dog. After being diagnosed with MCAS and noticing she had a natural alert Obi Wan became her medical alert service dog. She also now alerts to POTS episodes as well as helping with some mobility tasks. Andy says that training her dog helped her meet other people with her same disabilities which helped her feel a lot better about her life changing so quickly in a few years. It’s helped her feel less alone and helps to see how other people cope and what has helped them with their disabilities.
Andy is also a small business owner!! She makes service dog gear and her Instagram is @galaxypawsgear if you want to give her a follow!
January 2022: Stefani
Our January warrior of the month is Stefani!!
Stefani is a mom of two boys, a small business owner, and of course chronic illness warrior. She is a freelance hair and makeup artist based in Pennsylvania. However, she travels worldwide for work.
During quarantine, Stefani noticed her health was starting to rapidly decline and decided to get checked out. She was diagnosed with fibromyalgia, Hashimoto’s thyroid disease, and severe vitamin deficiency. Although she has learned to accept these new diagnoses, she also says it doesn’t make her job easier considering how much she needs to work with her hands. As well as the amount of time spent standing and driving during a job. She also says that although this has happened during the pandemic, she still hasn’t had much of a break because the season is doubling, and this year has turned out to be the biggest wedding season they’ve ever had.
She says that she refuses to let these diagnoses define her craft and makes sure to put her mental health a top priority. One way she does this is by taking time each day to do something that brings her joy. With past battles with anxiety and depression, she says it takes a lot of work to remain positive. She knows that not everyone understands what it is like to live with a daily battle. That a lot of the time people can feel overlooked or misunderstood, so she believes that taking the time to love yourself is the best thing you can do when learning to live with an invisible illness.
Her boys remind her every day about the importance to be a role mode of a strong woman in their lives. They are patient with her on flare up days and she says she is eternally grateful for being blessed with two beautiful babies who provide understanding, love and grace on my hardest days. Her husband has also been extremely supportive and helpful during all of the chaos of juggling her business while learning to live with the new battles of health. She says that having such a strong support system at home has been incredibly comforting.
Stefani says she tries to advocate for chronic illnesses as much as possible because she believes it’s heartbreaking to know that not everyone has this great support system. She hopes to inspire those around her to pursue happiness and love for and with yourself. She says to realize you’re not alone on this walk and embrace yourself for your imperfections. Even if it’s classified as a disease, there are no limitations to choose how we view that battle everyday and to choose love always!
You can follow Stefani’s Instagram @Bona.fide.beauty.co
December 2021: Nikita
Nikita is our Warrior of the Month for December!!
In 2008, Nikita started to realize that something was wrong with her health. About a month after her honeymoon she was in the hospital for how much pain she was in. However, she didn’t know the cause.
Doctors believed that the pain was stomach related and she was referred to a specialist. After trying a lot of different diets as well as running tests, Nikita was still in pain and nothing was changing. She mentions that at this time her periods were very heavy and the doctor eventually suggested endometriosis might be the cause of her pain.
In 2009, she was diagnosed with endometriosis after an exploratory surgery. After years of battling the chronic illness, she decided to have a hysterectomy.
Nikita encourages people to advocate for themselves because other people can’t always feel what is happening inside your body. Only you know. She says that as a business owner her chronic illness has taught her to “Know thyself”.
Her business is something that helps her feel in control considering chronic illness is such an unexpected thing. As a business owner she wants to help others. She is a photographer, podcaster, and coach for other creative small business owners with chronic illness. You can follow Nikita on instagram @thrivewithnikita and her podcast @craftedtothrive. Highly recommend giving Crafted to Thrive a listen if you are a small business owner!!
November 2021: Katie
Our Warrior of the Month for November is Katie!
Katie was diagnosed with Type One Diabetes at the age of 11. A few days before she was diagnosed, Katie had a big climbing
competition and she came home feeling very sick. She was later diagnosed when she went to urgent care.
Katie strives to show other diabetics that it is okay to show their pumps by wearing
hers in a visible place. She keeps both her glucose monitor and insulin pumps visible on her
arms when she has big competitions so that she can hopefully change someone’s life by simply
having them visible. Katie says that although training and competing can be more difficult with
diabetes and every single day is a battle, she has learned to never give up. She knows she and
other people can achieve any goal or dream you put your mind to.
“A hero is an ordinary individual who finds strength to persevere and endure in spite of
overwhelming circumstances. Remember everyone is fighting their own battles, but if you never
give up it will all be worth it one day it will all be so worth it. I am not ashamed of my pump and I
will always be happy to share my story”, Katie says.
She wants everyone to know that this month is Diabetes Awareness Month and that if anyone to donate to an organization that strives to find a cure and do more research she recommends donating to the Juvenile Diabetes
Research Foundation (jdrf.org).
October 2021: Vita
Our Warrior of the Month for October is the amazing, Vita (@wheelchairsparkle)!
Vita is both a model and student and is from Slovenia.
She was initially diagnosed with Spinal Muscular Atrophy (SMA) type 2 when she was about two years old.
When she was around the age of 20, a treatment called “Spinraza”, became the first ever available treatment for adults living with SMA in Slovenia.
Around that time, she had to have some tests done and the doctors found out that her initial diagnosis of SMA was actually false. She had even just had an appointment for Spinraza treatment just three days prior. She has been unfamiliar with what her correct diagnosis is, ever since.
Vita says she is not ashamed of her disability and is happy that She can tell her story. She sees being able to help others that are in the same situation as she was/is as a big plus in her life. She is happy to educate abled people that we’re no different - in any aspect. She proudly says that her disability won’t stop her from anything, and neither will yours stop you; you can achieve anything you put your mind to.
September 2021: Michelle
Our amazing Warrior of the Month for September is Michelle!!
Her daughter Kelsey says she is one of the strongest women she knows. Over the last year, Michelle was diagnosed with thyroid cancer. Due to this diagnosis, Michelle needed to have half of her thyroid removed. Since the surgery, she has also developed a few autoimmune diseases such as Hashimotos and Sjorgren’s disease. Although she has never had a high cholesterol or smoked, doctors have also found that she has narrowing in a few of her arteries but were, ultimately, unable to diagnose the cause.
She has managed to navigate both grieving her life before becoming chronically ill and being a medically high-risk patient during a global pandemic! Throughout it all, Michelle was juggling her teaching career and her full-time job running the entire radiography program for her college students, which was later adapted to be online. All of this was happening away from her loved ones and while she was taking care of both of her parents: her father, who was on hospice care and her mother who had dementia and had recently suffered a stroke.
Her daughter Kelsey says that her mom is the true definition of a warrior in her eyes!! She had been incredibly supportive of Kelsey when she became chronically ill five years ago. Now, Kelsey knows it’s her time to be there for her mom as she’s navigating becoming a newly chronically ill person herself.
August 2021: Crea
Our Warrior of the Month for August is the amazing Crea!!
She has Ehlers Danlos Syndrome (EDS) and says that every day is a battle for her. EDS is a rare connective tissue disorder that can affect several areas of the body. Crea was diagnosed at 13 and unfortunately, had to give up every sport that she played due to the condition. She had to completely change how she was living her life.
Although this diagnosis and change can be super hard, Crea tries her hardest to keep a positive mindset and a smile on her face! She is now a senior in high school and a great student. She runs two support groups on Facebook for other people with Ehlers Danlos Syndrome. Crea also shares her experience through Instagram posts/reels and her TikToks. Her TikTok is @_zebra_life_ and her Instagram is @one_dislocation_at_a_time.
Crea is also being tested for other illnesses such as MCAS, POTS, Gastroparesis, EOE, and sleep apnea. She has also been diagnosed with wide-spread chronic pain due to her EDS and her daily dislocations. She has to travel to children’s hospitals for her appointments, has physical therapy three times a week, and works with alternative pain medicine specialists every week. Crea says that she is in pain every single day , but doesn’t let that define who she is as a person!!
July 2021: Makenna
Our amazing July Warrior of the Month is Makenna!!
Makenna is a warrior with chronic and mental illnesses. Although she says these are a struggle she strives to spread awareness of, she believes that both are severely misunderstood especially when they are invisible. Makenna has been diagnosed with IBS, endometriosis, interstitial cystitis, vulvodynia, trigeminal neuralgia, tachycardia, asthma, anxiety, and major depressive disorder.
Makenna was born sick. She had severe stomach issues as well as seizures. When she was in high school, she was diagnosed with IBS-M. Then shortly after graduation within a span of a few months she was diagnosed with endometriosis, trigeminal neuralgia, and later tachycardia. A year later she was diagnosed with vulvodynia and interstitial cystitis. She was recently diagnosed with severe anxiety and major depression disorder as well.
All of these illnesses have affected her life in many ways, so Makenna strives to raise awareness and share her story. Makenna shares her story on her Instagram to show those around her that although she is sick it does not mean she isn’t strong. She doesn’t let her illnesses define her. You can follow this amazing warrior on her Instagram @kenna_rae64!
June 2021: Daniel
Dan is our amazing Warrior of the Month for June!!
Dan is a great activist for trans rights as well as disability awareness! He says he is a ‘medical mystery’ and is currently diagnosed with central sensitization. Central sensitization is a form of chronic pain associated with the nervous system. He also has chronic fatigue as well as a possible undiagnosed functional neurological disorder (FND).
Dan’s symptoms started around two years ago on the exact day of his sixteenth birthday. He went out to eat and throughout the meal, he started to feel excruciating neck pain. Progressing quickly, this pain led to paralysis in his lower legs. Dan was shocked when he realized he had no movement or feeling in his lower legs. That night, Dan was left in tears and panicking about this sudden paralysis.
Fast-forward a few years, now temporary paralysis has started to become a normal thing. It mainly affects his legs although, in the last year, he has started to get paralysis in his arms as well. Dan says that sometimes only one limb can have paralysis and other times it is all of them. In addition to all of this, his joints can dislocate at random times even if it is just from moving slightly. All in all, Dan has a form of chronic pain, chronic fatigue, muscle spasms, and memory loss which can make day-to-day life difficult. He says that some days he is bed-bound and other days he is ready to take on the world!
To help with his medical conditions, Dan uses mobility aids such as crutches and a wheelchair. At eighteen, Dan is still acclimating to his mobility aids as well as needing caretakers to help him with daily tasks. Unfortunately, he and his team are no closer to answering what the cause of his paralysis is. So far, he has been in and out of the hospital and gone through nerve tests, blood tests, CT scans, and MRIs. Since all of them have come back clear, he has been considered a medical mystery.
However, even with everything on, he educates other people about disabilities. He also strongly advocates for trans rights, using his social media to boost awareness and acceptance. In Dan’s spare time, he volunteers with a local scouting group. There he loves to kayak, rock climb, and camp even when he is not feeling very well. His main goal in life is to become a marine biologist and he will be attending university next year to achieve this!! You can follow Dan’s journey on Instagram and TikTok where both usernames are @thedaniel.miles.
May 2021: Brianna
Our May Warrior of the Month we are featuring is the amazing Brianna!
When Brianna was 2 and a half years old, she was diagnosed with a rare disease called Nephrotic Syndrome and Focal Segmental Glomerulosclerosis (FSGS). Nephrotic Syndrome is when the kidneys scar from proteinuria, which is the excess of protein in urine. Brianna’s parents first noticed that she would wake up with a swollen face, and eventually her whole body would become swollen. Doctors told her parents it was allergies, but she was soon sent to the emergency room to receive her diagnosis. Since there is no cure for FSGS, she was put on numerous medications, including high doses of Prednisone to slow the progression of her disease. She has gone through many experimental treatments, medications, and eventually was put on dialysis at age 12 due to kidney failure. Brianna was also doing plasmapheresis, where she would go into the hospital multiple times a week to get her blood “cleaned out” through a machine and put back into her body. By age 14, she underwent a kidney transplant and immediately, her disease came back. She spent two weeks in the hospital undergoing more experimental medications, treatments, and plasmapheresis. Eventually, she achieved remission with plasmapheresis and an IV therapy called Rituximab that wipes all of your B cells. Now, 10 years later, her kidney function is around 30% - 40%. In the past 10 years, she has had episodes of rejection and recurrence of her disease but has been fortunate to bounce back and have effective, yet grueling, treatments work for her.
Kidney transplants for people like Brianna aren’t necessarily a cure, and she will have to have more in the future until there is a cure or perhaps the invention of an artificial kidney. She is so grateful for all that she went through since it shaped her into who she is today. She wouldn’t change a thing or wish to be a “healthy” person. She’s proud of herself and all others she has met due to chronic illness, and she is currently a chronic illness and mental health advocate. She has gone to Washington, DC and has spoken to U.S. Representatives and Senators about prioritizing the need for funding to find a cure for FSGS. She also meets with new residents coming into Massachusetts General Hospital where she shares what it’s like to have a chronic illness to help educate them on what’s important to know about being a patient. Brianna is so grateful to be a part of something bigger than her and for having found a community within the nonprofit organization NephCure whilst they fight for a cure.
April 2021: Eli
Our warrior of the month for April is Eli!!
Eli is a Type 1 diabetic that was diagnosed on February 13th, 2019. His symptoms actually started the November before. He had been drinking a gallon of water a day which quickly turned into 3-4. Of course, drinking that much water had an effect on how much he was eating and he lost some weight. This is the point that he started to feel too sick to want to move and get out of bed.
Eli knew something was going wrong when he went on a trip to visit his sister and his symptoms were getting worse. He couldn’t walk straight while also having head and stomach pains. The symptoms persisted for the next two days with vision problems being the main problem. However, he decided to still go to school, but had to go home pretty quickly after blacking out in class. Then on his walk home he took a bad fall. He was then taken to the doctor by his mom and after an hour of talking to the doctor she decided to do bloodwork. Although he had been drinking tons of water all day, Eli’s veins were extremely small so it was very difficult to get the blood they needed to run tests. Later that night, after being sent home, Eli was told he needed to be rushed to Children’s hospital in the morning because the diagnosis could be either leukemia or Type One Diabetes. After getting to the hospital and finding out he had a blood sugar of 879, Eli was diagnosed with type one diabetes.
Two years later, Eli is an advocate on instagram for other type one diabetics. He is managing his diabetes and the graphics on his Instagram are super informational and help spread awareness for his chronic illness!! His instagram is @emoneyt1d for those that would love to follow along on his journey!
March 2021: Summer Hope
Our Warrior of The Month for March is Summer Hope!
At the age of 9, Summer Hope was diagnosed with a moderate-to-severe form of Tourette Syndrome. Tourette Syndrome is a neurological disorder characterized by involuntary physical movements and vocalizations called tics. She has dedicated her life to spreading awareness for this very misunderstood disorder, along with the other conditions that correlate with it. She has gone on to making TikToks to raise awareness and has been a part of the Tourette Association Florida Chapter as a support group leader, helps run events, and supports the youth program at the association’s local events.
On the national scale, at the age of 16, she was accepted to become one of five teens with Tourettes from Florida to become a National Youth Ambassador within the Tourette Association. She marched on Capitol Hill and spoke with state senators, staff and her representatives to help pass laws to support individuals with Tourettes. She was also equipped with the tools and resources to go into schools, clubs, jobs, and organizations to give a cue card presentation slide about Tourette Syndrome.
In addition to all of that, Summer also volunteers as a camp counselor at Camp Twitch and Shout based in Athens, Georgia for kids, ages 8-17, with a diagnosis of Tourettes. She attended Camp Twitch and Shout for 3 years as a camper and has now had the opportunity to be a counselor for 2 years. She plans on working with the camp for many more years. Summer is a very creative, funny, optimistic young woman who loves people deeply.
“My mission in life is to never let anyone grow up feeling alone within their disorder like I did.”
Follow Summer on her journey of spreading awareness and changing lives!
February 2021: Alicia
Our February Warrior of the Month is Alicia!
Alicia is a brain tumor fighter and survivor, chronic illness warrior, and living with vision loss. She was diagnosed with a brain tumor at only 6 months old and has lived with it for 21 years. Her tumor has caused her vision loss, as well as chronic illnesses.
Despite these challenges, Alicia seeks to raise awareness by sharing her life on social media and speaking publicly on various topics such as disability awareness, brain tumor awareness, and living with vision loss while being a college student. Alicia has spoken at her college as a member of a student panel, as well as for events with non-profit organizations. She is also an ambassador with the Canadian National Institute for the Blind (CNIB) Foundation, a non-profit organization driven to change what it is like to be blind today.
Alicia is truly showing that a disability does not have to stop you from achieving your goals and dreams. She is an incredible advocate and patient leader. Alicia says that she aspires to be the role model she never had growing up and set forth the example that, despite your diagnosis, you can be successful.
Connect with Alicia:
We are starting 2021 off with an amazing Warrior of the Month named Omma!!
In 2011, when she was 22 and in her final year of University to complete her masters, Omma was silently suffering from intense cramps, severe fatigue, weight loss, diarrhea, and blood in her stool. She said her immediate thought after googling it, of course, was Bowel Cancer. I'm sure we have all been there, Google can make us think the worst! After having a colonoscopy, it was revealed that she had Crohn's Disease.
Within a year of her diagnosis, Omma's bowel had perforated and she needed life-saving surgery and had to be given a stoma. She was initially told that the stoma would be temporary, but after five years of deteriorating health, she was backed into a corner. Having a permanent stoma and her back passage removed was the only option if she wanted a better quality of life. Omma has had her stoma for three years and says that she can say that the doctors were right! She says life is so much better now, but she still reminisces about having lost out on her 20's.
Because Omma spent so much time in pain and months in the hospital with numerous surgical procedures, she feels like she missed out on a time where she should have been building her career and trying to gain financial independence. Omma says that knowing that Crohn's Disease is chronic is a bitter pill to swallow and oftentimes feels like it's stuck in her throat. She constantly has to remind herself to shake off societal expectations and live each day as it comes. Omma tries to remember that her goals don't have an age or time frame and that she is still capable! It may take longer to get there, but it doesn't mean she won't get there!
Omma shares life about her journey on her Instagram account @ostamateforlife.
December 2020: Kaci
Our December Warrior of the Month is Kaci, a 26 year old Multiple Sclerosis warrior.
Kaci was diagnosed in April of 2017 in the process of litigating a motor vehicle accident when her first symptoms began to emerge. "I got into my hot rental car during a lunch break when my fingers, arms and elbows began to radiate with numbness immediately. I saw a neurologist shortly after that who ran some tests, MRI’s and CT scans which confirmed that I was experiencing an exacerbation for Multiple Sclerosis. After the diagnosis I was referred to a neurologist in my city who would be of assistance from there. Fortunately, despite the contrary, my neurologist was very helpful and attentive to my illness. I immediately started a round of steroids to halt the flare up and I was prescribed medications that ultimately did not work for me until I found the one that did."
After all of this, Kaci was a tad bit in denial about her illness and wasn’t sure what was going to happen next or if she was going to live her life with these unpredictable bouts of numbness. Kaci says, "To “escape” my illness, I tried to come up with something to truly keep me busy and distracted. A few odd ideas fell into my lap where I soon fell in love with roller skating. I thought that by doing something so fun, that I actually enjoyed, would help me clear my head about dealing with a chronic illness. "
Shortly after she took up roller skating, and with some serious thinking and considering, she was convinced to start a blog and an Instagram page about roller skating and MS. Kaci says, "It took me a while to put my heart into my page and my blog as I couldn’t see the social acceptance or value of combining such areas of my life where most people with my condition don’t come to a crossroads at. But with a little time, the positive comments and the followers kept coming and kept growing. I soon learned that my chronic illness and learning to roller skate were what made me an inspiration to others, and that I was seen, heard and admired for it. I realized that I was inspiring people to make the best out of their situations, which in turn, inspired myself to see my illness in a different way. I began putting more effort into my social presence and giving others my positive encouragement to embrace the things that make them, them."
Isa, a member of our communication team, has followed Kaci on social media and says she is someone she looks up to while roller-skating with a chronic illness with similar symptoms. Kaci is inspiring and helps her keep continuing to skate after flare-ups and rest days!
Kaci’s social links are @myelinmoxi on Instagram and Facebook and her website is www.myelinmoxi.com.
November 2020: Branson
Our November Warrior of the Month is Branson! Branson's story starts in childhood when his parents began to notice that he wasn't developing as quickly as his peers. Despite their concerns, doctors told his parents it wasn't a problem. When Branson was not walking until he was two, in third grade he was not able to get himself into the car, and he missed many other developmental milestones.
In third grade Branson's mother took him to see a neurologist at Cooks Childrens' Hospital in Dallas, TX and he was diagnosed with Cerebral Palsy and a Chiari malformation type II. Chiari malformation type II is a type of Chiari malformation where both the cerebellum and brain stem extend out of a hole at the base of the skull and touch the spinal cord. At the time, the science and research on the Chiari was non-existent. In fact, the doctor's office called Branson's family about the diagnosis and told them to google it.
Over the next decade and a half Branson battled with a slew of unexplainable symptoms and pain. In his sophomore year of high school his symptoms intensified. He kept blacking out, he went from an AP student to failing his classes, and he broke up with his girlfriend suddenly and seemingly without much feeling or care. No one could explain what was happening to him. Doctors did physical examinations, changed his diet, and even gave him a drug test. After several hospital visits, he was told to go home and hope for the best.
Eventually, Branson's episodes of passing out and his feelings of not caring much about things in his life went away, but the pain and other symptoms stayed. At the beginning of this year many of his old symptoms came back and additionally, he was experiencing widespread confusion. He went from a gifted speech and debate student in high school to a college student that couldn’t put his thoughts together. At the request of his fiancée, he went to see a neurologist at Memorial Hermann in Houston, Texas. After the neurologist talked to him for about ten minutes, he knew two things: Branson was showing failure in his nervous system and he needed to see a neurosurgeon.
Pretty soon after, Branson saw a neurosurgeon who agreed it was time to decompress his Chiari. About a month later they attempted the brain surgery, but as soon as they cut into and pinned back Branson’s neck muscle his blood pressure tanked. They did an emergency closure and intubated him. When he woke up, he was medically paralyzed and restrained with a breathing tube down his neck. No one told him that it was temporary and would wear off in a couple of hours. Branson says this was the scariest moment of his life. At the end of September - after having recovered and gone through vigorous cardiology testing and clearance - they gave the surgery another go and this time they had success.
Since the surgery, Branson has discovered many of his symptoms were linked to the Chiari. For Branson, it was just a matter of waiting for the science to catch up to where we are today. He still has pain and some symptoms, but overall he says he is very blessed. In May of next year, Branson will graduate from the University of Houston with a BFA in Theatre Education and will also marry his amazing fiancée, Ann. After graduation, he is excited to start teaching theatre and plans to pursue an MFA in Theatre Education.
October 2020: Sophia
Our October Warrior of the Month is Sophia!!
When she was 15, Sophia battled back pain and stiffness for months before finally seeing a spine specialist at Texas Scottish Rite Hospital for children on October 12th, 2018. She was diagnosed with severe scoliosis, or a curve of her spine, in the thoracolumbar region. A few months later she went to get x-rays and saw that her curve had progressed. They decided surgery would be the best option for her. Five months later on August 13th, 2019 she underwent spinal fusion surgery. Her surgery took nearly four house and the surgeon fused T2-L3 of her spine! The surgery went well, but two weeks after her surgery she got an infection in her incision that required antibiotics. Two days into the antibiotics Sophia started to experience achy fingers, toes, and a headache that wouldn’t let up. Four months later she was diagnosed with fibromyalgia and chronic fatigue. A few months after that she was also diagnosed with dysautonomia after experiencing pre-syncope symptoms. Then later also diagnosed with chronic migraines. She has tried many meds and even nerve blockers that didn’t even touch her migraines. She says it’s been a wild ride but it isn’t over yet!! Sophia says that through her journey, Jesus has been by her side through it all and has reminded her that there is LIFE in every moment and she doesn’t need to worry about tomorrow! If you want to follow Sophia’s journey you can follow her on Instagram @sophiasscoliosis!!
September 2020: Faith
Our September Warrior of the Month is Faith!!
Faith was nominated by her friend Emmy who says that Faith fights so hard everyday and still puts in the effort and energy to show others that they are loved and seen. Faith says that she clearly remembers the day her life changed forever which was the day after she turned 15. Now 4 years later, she says her life looks like nothing she ever would’ve imagined. Faith has Gastroparesis and Intestinal Dysmotility which has put her on TPN and then Mast Cell Activation Syndrome sealed that deal. All but two foods put her into anaphylaxis. TPN stands for Total parenteral nutrition. TPN provides patients with all the nutrients they need and bypasses the gastrointestinal tract. Faith is also diagnosed with Ehlers-Danlos Syndrome which is an illness that makes her joints very unstable and causes another of her diagnoses - Cervical instability. This instability in her spine makes her unable to walk without wearing a neck brace. Faith is super thankful for having access to her feeding tube, oxygen concentrator, PICC line, wheelchair, and her braces that keep her alive. She spends most of her days in bed right now, but says there’s so much hope on the horizon!! She says God has answered many of her prayers in extraordinary ways, especially this year. She’s on the path towards healing and won’t stop fighting till she gets there! Faith’s instagram account is @wildflowers.in.her.hair where she inspires so many people. She’s even an Aerie ambassador!! You should definitely give her a follow!
August 2020: Olivia
Our August Warrior of the Month is Olivia!!
Olivia is a 14 year old CRPS warrior along with a few other medical conditions. Despite having these conditions though, Olivia is positive, hard working, strong and her friend Avery says she will always go out of her way to cheer her up and the other patients of their Pediatric Pain Rehab group. Olivia puts others before herself to check up on everyone and make sure they are doing well mentally and physically. Avery says that Olivia is also always there to give the best pep talks when a member of the group might need one! Olivia works hard every day to make sure she’s doing everything that she can for her body but also does her best to continue with typical activities. She doesn’t let her pain stop her. Olivia always has a smile on her face even when most people probably couldn’t. She is super strong and positive!
July 2020: Shelbi
Our Warrior of the Month for July is Shelbi!
Shelbi suffered Cauda Equina Syndrome (CES) in November 2019 and has had four surgeries since with the fourth as recent as June 29th. CES occurs when the nerve roots at the base of your spine are compressed and disrupt motor and sensory function to parts of your body like your bladder or legs. Due to the CES, Shelbi was diagnosed with Chronic Regional Pain Syndrome (CRPS) type 2. This causes her to be in constant pain in her foot, calf, knee and recently it has spread to her left hand and wrist as well.
Shelbi has been fighting without being able to spend time with her nieces and nephews who light up her world because of COVID-19 and quarantine requirements for surgeries. Despite all of this, she has made masks and donated them to people who have needed them. According to her husband, Freddy, she has never once asked for sympathy or felt bad for herself. He says she always faces problems head on and never gives up. He has seen her cry, wipe her own tears, then get back to researching her own condition and ways to heal. She is determined to continue fighting and find ways to control her CRPS and is truly the definition of a warrior!
June 2020: Sammy
Our June Warrior of the Month is Sammy! Sammy is 23 years old and currently fighting many chronic illnesses. These include dysautonomia, POTS, inappropriate sinus tachycardia, IBS, chronic migraines, slipped disc, chronic nausea, and ongoing tests for further symptoms. She suffers from palpitations, heart disturbances, high blood pressure, migraines, dizziness, brain fog, and fatigue just to name a few symptoms. She also recently got out of the hospital due to some slipped discs and is now recovering from home.
Sammy started to get sick only 3 years ago. It simply began with palpitations and a fast heart rate which has since never settled despite the various medications she is living on to treat this. It caused her chest pain at the beginning and lead her to make a routine trip to see her general practitioner. This gradually transitioned into a bigger problem as they found out that the underlying cause was her entire Autonomic nervous system. Your Autonomic Nervous System is the nerves that send signals throughout your entire body to do anything that your body should be doing automatically such as your breathing, regulating your heart rate and blood pressure, digestion, urination, etc. It can cause a whole world of disability symptoms.
After being under more than 10 different hospitals, various specialists, traveling across the country to seek help, and having had several tests, Sammy says she now has some validation of the conditions she has and has somewhat of a treatment plan in place.
Although these conditions can be life-changing, she always tries to remember that she is much more than the diagnoses she has. She is a loving wife, a daughter, a sister, and a dog mom. She is trying her hardest to remind all of those who are battling an invisible illness to not forget who we truly are as individuals through her social media platform. Her goal is to make those voices heard and make these "invisible illnesses" a little less invisible along the way.
Sammy recently started a challenge on Instagram called 'there is more to me'. She started this because as amazing as different chronic illness pages are to be able to relate, reach out, and educate others, she feels that sometimes it can be a world of medications, more hospital talk, bad days, and flare-ups. Although this is all such a huge part of our lives she felt that what was missing was some positivity and people could be giving our illnesses way too much power over ourselves, herself included. She felt that we were missing everyone's desires, hobbies, and all of the amazing things we fight for in the first place. She was overwhelmed by the response she received and it lit up Instagram feeds with positive photos. Sammy says, "Suddenly we stopped being that sick friend, or that person in a wheelchair, just for a little while we were just ourselves, living our lives with a chronic illness not trapped inside the diagnosis we have labeled with and that's all I could have ever asked for".
Having lived on both sides of the story of being both healthy and sick. Sammy thinks that in some ways she believes it has made it harder for her to accept her new ways of life. However, she says that one day it all hits you and you realize there's no point in fighting the things which are there to make your life more manageable such as help, mobility aids, and medications. Some advice Sammy has is to know the importance of self-advocating! She also believes it is important to educate yourself in all aspects of your condition to help with this fight of self-advocacy.
Sammy says, “To be totally honest with you all, I don't believe in regrets and I sure don't believe in wishing away the one precious life we have all been given. Sure I have lost some people along the way and sure it's felt impossible at times but I can honestly say that I wouldn't change a moment on this earth so far because as hard as the last few years have been, I have found strength that I never knew I had, I have been shown more love than I ever thought was possible, and I have adapted my life more than I ever imagined I could. You still need to dream and you still have to wish, just don't forget that it's ok for the picture you had for your life to change a little along the way. You can make a beautiful life for yourself whatever it may take. Just remember that you are not your illness, you just have one".
You can follow Sammy's journey and join her movement through her Instagram page @sammysdysautonomiajourney.
May 2020: Skylar
Skyler is a warrior who is currently fighting many chronic illnesses including POTS, EDS, Fibromyalgia, and convulsive syncope with a possibility of MCAS and Craniocervical instability (CCI). Skyler was born premature at 24 weeks gestation. They were less than a pound, only 8 inches long, and not suspected to survive. However, Skyler came out fighting and hasn’t stopped fighting since then. As a baby they had to have eye surgery to reattach their retinas and spent years going to physical and occupational therapy. Despite being so premature, Skyler was only left with some weakness on the right side of their body and is legally blind. Skyler excelled in school, was well liked by all their teachers, and was always awarded the principal’s honor roll. However in October of 2010, everything changed. Skyler developed mononucleosis and hasn’t been the same since. Shortly after their battle with mono, Skyler began to experience many symptoms including lightheadedness, chronic nausea, shortness of breath, gastrointestinal issues, and other seemingly unrelated symptoms. Not long after developing those symptoms, Skyler also started to experience unpredictable fainting spells that left them dependent on a wheelchair. They also started to develop chronic pain, joint dislocations, malaise, and more. After 5 years of going to many doctors and having numerous ER or urgent care visits, undergoing countless tests and procedures, and going through many medication trials. Skyler was diagnosed with POTS, Hypovelima, and neuropathy. About 4 years later, at the Cleveland Clinic in Ohio, Skyler was diagnosed with EDS (hypermobile type). Unfortunately, permanent damage had been done from EDS such as further vision loss due to glaucoma, bone loss in their ankle and spinal cord, and demineralization which caused many oral issues. In 2018 Skyler began experiencing seizure-like activity after they fainted.The seizures mimicked grand mal seizures and began to happen up to 10 times a day. Skyler unfortunately went through mistreatment from doctors and was denied by several doctors, despite referral, due to their “medical complexity”, their insurance, or it wasn’t necessary to be seen. Doctors believed that they were making it up and after several years of being passed from doctor to doctor, skyler got the diagnosis of convulsive syncope. Additionally Skyler also has battled depression, PTSD, and anxiety. However, throughout all of this Skyler has not given up.
In 2019, Skyler was nominated for the Rising Star Award for Dysautonomia Support Netowrk’s Patient’s Choice Awards. They’ve also had several of their poems featured on multiple websites and one of their poems was even showcased in one of their doctor’s offices. Skyler has noticed how much their poetry has impacted people’s lives and has since started a Facebook blog to share their story as someone living with chronic and mental illness. Along with their blog, Skyler has also started an instagram to share their journey. You can follow Skyler on instagram: @chronically.challenged and Facebook: Chronically challenged: Finding Myself Through Chronic Illness.
April 2020: Sam
Our warrior of the month for April is Sam!
Sam is currently fighting Grade 4 Glioblastoma, an aggressive form of brain cancer, after being
diagnosed in July 2019. Sam’s journey started when a 7 cm brain tumor was discovered during
a CT scan in June 2019. Shortly after this discovery he lost mobility in his whole left side and
had an emergency craniotomy three days after arriving at the hospital. This surgery was
performed by Dr. Cusimano who is the best surgeon in Canada. Sam was told if he hadn’t had
his CT scan and surgery he would’ve only had around 2 more weeks to live. Shortly after being
in recovery and rehab for two weeks, Sam got his pathology report that he had Brain Cancer
Glioblastoma Grade 4. However, Sam isn’t letting this get him down!! He is determined to fight
and started Good Vibes Only to create hope, spread awareness, and raise money for Brain
Cancer. He is currently undergoing a year's worth of chemotherapy which is 5 days a month for
12 months with projection to finish treatment in September 2020!!
Sam’s hobbies include playing guitar, snowboarding, hiking in the forest, and traveling. He
hopes to travel the world, get a German Shepard and a truck, marry his girlfriend, Laura, and
start a family together one day.
Staying busy and keeping focused on his goal is what keeps Sam going through these tough
times. The goal being to continue spreading awareness for Brain Cancer and working on his
Good Vibes Only fundraising initiative. Getting to personally make and hand deliver orders to
people who are supporting his cause or going through something similar gives him hope.
However, all of his strength comes from his loyal and devoted girlfriend who has been by his
side during the entire cancer journey. Sam says he doesn’t know where he would be without
On average, aggressive Brain Cancer like Sam’s has a survival rate of 1-2 years after
diagnosis. This fact and learning that Brain Cancer is one of the most underfunded types of
cancer is what has inspired Sam to share his journey. He wants to do something because he
believes there is a possibility to have a future without brain cancer. Sam started Good Vibes
Only to spread awareness for Brain Cancer and to raise money for the Gerry and Nancy Pencer
Brain Tumor Center at Princess Margaret which is where he receives his treatment. You can
join #SAMSARMY on instagram and help Sam spread Good Vibes Only for Brain Cancer awareness. You can also follow him on instagram @goodvibesforsam !!
awareness. You can also follow him on instagram @goodvibesonlyforsam!!
March 2020: Indie
Our warrior for the month of March is Indie!
I am so excited about March's Warrior of The Month!! It's also her birthday month!
Indie was born with Esophageal Atresia and Trecheoesophageal Fistula (EA/TEF) Because Indie's anatomy was altered/corrected at birth, she is still "learning" the proper swallow and thus, she aspirates thin liquids. She also has a laryngeal cleft, which is a second birth defect in addition to EA/TEF - they frequently happen together. This will be repaired surgically in 2020, which contributes to her chronic aspiration. She drinks bottles that are thickened to nectar consistency to prevent damage to her lungs. Another challenge we are all trying to get used to is how others react to some of Indie's noises! EA/TEF children have softer tracheas and this results in a "barky" cough or a "honking" noise during times of excitement, laughter, physical activity, etc. Unfortunately, strangers automatically assume that she's sick and want to keep their distance. We are still fine-tuning a suitable, quick explanation to ease the discomfort of others, while prioritizing Indie's confidence.
Indie loves chasing her two dogs around in her walker! She also loves eating finger foods (especially avocado and sweet potato fries), and she stands and cruises on every possible surface! By the time this is featured, she will for sure be walking all over the place!
Indie has a family that will drop everything on a dime to be by her side during tests, procedures and doctors' appointments. She is cared for by the specialized EA/TEF Clinic at Columbia New York Presbyterian Hospital and it brings us all great confidence in knowing her care is in such incredible hands. We have also met many families with EA/TEF kids, both in person and online. Having this community and watching older people live normal lives with EA/TEF is the light at the end of the tunnel. We are all so grateful to have made these personal connections so that Indie knows she is not alone.
Her future goals include a successful laryngeal cleft repair in 2020, eventually being cleared for thin liquids, and minimal "stuckys"! A "stucky" in the EA/TEF community is our way of saying that food gets stuck in the narrow part of the repaired esophagus. Sometimes a "stucky" can be cleared on it's own - and other times it requires surgical intervention. Some children experience stuckys frequently, and others rarely with zero food restrictions! Our hope for Indie's future is for her to have the latter... and most importantly, a healthy and happy relationship with food. She is well on her way.
Indie's awesome mom, Liz, was inspired to document her journey because EA/TEF happens 1 in every 4,000 live births, which is a lot more common than you'd think. The first successful EA/TEF repair was done in the 1940's, meaning many of the first survivors are still alive to this day. There is VERY little research about this condition, nobody knows why it happens in utero, and so few people have even heard of it! (We first learned of it a mere 45 minutes after Indie's birth... and many of our friends with EA/TEF children were in the same boat.) With a blog platform like the one I have, I believe I've got enough "eyeballs" reading my content to spark up a conversation about EA/TEF. We hope that sharing Indie's story will inspire people - especially parents - to have patience and grace towards others... because things aren't always as they seem. Our story will serve as a reminder to people everywhere that special needs are not always visible on the outside!
February 2020: Jade
Our Warrior of the Month for February is Jade!
Jade is fighting type One diabetes, seizures and gastrointestinal issues. She loves watching Brooklyn Nine-Nine on Netflix and going on road trips in her spare time. What keeps her going through hard times is her brave dream job of being a police officer. She would love to able to make a difference in people’s lives. Jade has been inspired to share her story because of her amazing paediatric nurses. They have given her the confidence to talk about her conditions. Jade is very happy she is now able to share her story and show people they are not alone!
January 2020: Katie
Our Warrior of the Month for January is Katie!
Katie is currently fighting a LOT, including: colonic paralysis, a connective tissue disorder, POTS, autonomic dysfunction, gastroparesis, chronic pain (fibromyalgia), a neurogenic bladder, just over a 1.5 years post-op from spinal fusion to correct scoliosis, and has a suspected autoimmune condition.
Katie loves to play the guitar, ukulele, piano, and drums as well as bake. In addition, she is a retired competitive swimmer of nearly eleven years, but still loves to coach private lessons when her health permits. Katie is also a passionate writer and photographer.
Her organization, Katie’s Cozies, is her motivation to fight each day. Through KC’s, she makes and donates fleece blankets to the inpatient kids at her local children’s hospital after receiving one of her own a year ago. Her family, friends, and fellow spoonies also motivate her to stay strong through the chaos of each day, and she is truly thankful to them.
One of Katie's goals is to attend college. She would love to study psychology or biochemistry; polar opposites. On the contrary, Katie would love to write and be a motivational speaker/voice for the disabled community.
Her best friend, Brianna, inspired Katie to share her journey. She is also chronically ill and found that writing about what she was going through as well as connecting with others similar to her was extraordinarily helpful in coping. She wasn’t wrong! Katie is much happier now that she has made virtual friends who understand what she goes through each day. She has actually met others in her area through her Instagram platform and has become friends with them that way, too!
Thank you for sharing and being an awesome warrior, Katie! We are so excited to celebrate you!
December 2019: Meg
December's Warrior of the Month is Meg!
Meg has been living with Multiple Sclerosis since 2004- originally diagnosed as Relapsing Remitting MS which eventually progressed to Secondary Progressive Multiple Sclerosis. She has a multitude of other comorbidities that make the disease challenging and complex, including Anxiety/cPTSD, Dysautonomia (HyperPOTS/IST), Erythromyalgia, Intestinal Dysmotility (GP/Colonic Inertia/Esophegeal Dysmotility/Dyssynergia), Hashimoto’s, Narcolepsy, Osteoarthritis, Peripheral Neuropathy, and Raynaud’s. Completely unrelated to the MS, Meg was born with a Chiari Malformation which was repaired through neurosurgery in 2015.
Meg and her husband share a strong love of animals- and currently have a dog Bear, who they adopted in 2017 and rehabbed after a significant injury and subsequent surgeries. Bear is a mix of Great Pyrenees, Golden Retriever and Beagle- he’s quite a handsome resilient boy. She absolutely loves wineries and trying new wine, even though she's often unable to tolerate it due to allergies and medication interactions. Meg would love to tour Napa Valley one day! And she can’t forget her reality TV passions- especially anything on Bravo and of course the Bachelor franchise! Will you accept this rose?
No matter how much Meg hates the symptoms and challenges she deals with every single day, a tiny bit of hope ALWAYS wins out. Hope that things will get better, hope that her symptoms will decrease, hope that her quality of life will improve. She may say “I can’t do this anymore,” more times than she would like to admit, but that little bit of hope is still stronger.
Overall, Meg hopes we find a cure for Multiple Sclerosis that helps everyone, not just patients with the most common type. For her specifically, she hopes to start a nonprofit that is focused on patient advocacy. "No one teaches you how to be sick, or how to advocate for yourself. I’ve learned only through trial by fire, and lots of tears, and I hope to save future patients those horrific learning curves and give them tools to empower themselves and identify their options much sooner than I did."
When she was diagnosed at the age of 23 Meg felt incredibly alone. No one her age had significant health problems, let alone a progressive incurable disease. Social media had not taken off yet, and support groups could be toxic environments where she was the youngest in the room. Meg wishes she had known there was someone like her out there- it would have made this journey a little less painful and a lot less lonely.
November 2019: Destinee
We are so excited to introduce our Warrior of the Month of November, Destinee!
Destinee has been sick her whole life, but in 2015 her health declined rapidly. Her main diagnoses are; Gastroparesis, Juvenile ankylosing spondylitis, POTS, MCAD, and Sleep apnea. She is finding it challenging to adjust to life out of hospital since having two minor heart attacks in September and losing functioning of her bladder, bowels and right leg, but we are so proud of her strength and courage in getting through this tough time! We are always cheering her on.
For hobbies, Destinee especially loves to watch sports and movies, enjoys painting and photography, and at one point was a national athlete for track and hockey!
During the more challenging times, her support system and hope are what keeps her strong. At her weakest points where she feels in the dark, her family is the light that allows her to rise up and be strong. Faith and hope are two words that Destinee thinks of every day to keep her going - hope for a brighter future and faith that she is exactly where she is supposed to be.
Destinee hopes to continue advocating for chronic illnesses and creating a support group in her community, as well as traveling the world meeting other warriors! Isn't there just something about those who "get it"?! She plans on going to med school with the goal of becoming a pediatric oncologist or a family physician to help others and hopefully bring hope to a broken system. We think this is just incredible! To be able to think of giving back to others when you are struggling yourself is truly what being a warrior is about!
Destinee began sharing her journey to meet others like her and to generate awareness for chronic illnesses. She shares her journey to hopefully inspire others to share their stories and to always know they have someone to support them and believe in them through everything! The road might be curved and rocky, but together - we can do anything!
You can learn more about Destinee and follow her story on Instagram: @fightlike_d
October 2019: Abby
Our amazing Warrior of the Month for October is Abby!
Abby has had non-epileptic seizures since August of 2018 and still doesn't have a clear diagnosis. She has been diagnosed with FND (functional neurological disorder) but many medical professionals are unaware of the diagnosis and as a result, Abby often faces doctors who seem to pass off her symptoms as a ”mental health issue”. She is understandably still seeking answers! Abby also struggles with anxiety and depression.
She loves to spend time with horses, paint, read, and watch The Office in her free time.
Abby finds comfort in knowing she is not alone in this journey, and it helps her push on!
Her goal is to one day be a marine biologist!
Abby went back and forth for a long time before deciding to open up about her health struggles, and was inspired by other people who talk about what they’re going through. She wanted to be honest so that she too can inspire people and give them some hope as they fight their own battles. Abby wants fellow warriors to know there are people out there that are going through the same thing as them; people that know what it's like to be in their shoes.
Her instagram is @abbycjenkins.
Thank you so much for sharing your story, Abby!
September 2019: Mandy
Our amazing Warrior of the Month for September is Mandy!
By day Mandy fights chronic illnesses - by night, she works as a 911 Police and Fire Dispatcher! Mandy battles Classical Ehlers Danlos Syndrome, Chronic Idiopathic Urticaria, Hashimoto’s Thyroiditis, Asthma, and Chronic Migraines. Despite the challenges she faces, Mandy refuses to let chronic illness define her! She strives to bring awareness not only to the illnesses she faces, but to all conditions!
We admire Mandy's strength and her determination to never let her challenges define her. She is someone who embodies what it means to Fight Like A Warrior and we are so excited to be celebrating her this month. Here's to you Mandy!
August 2019: Jenna
We are so excited to announce Jenna as our August Warrior of the Month!
Jenna is fighting a few illnesses, but they aren't holding her back from living life to the fullest! She struggles with panic disorder, major depression and anxiety, non-epileptic seizures, and complex regional pain syndrome, also known as CRPS. Growing up from the age of seven, Jenna struggled with depression, and since the age of 16, she began seeking therapy, which eventually led her to outpatient and inpatient treatment for her senior year of high school.
During this time, she began experiencing extreme panic attacks, that later found out to be non-epileptic seizures, caused by her heart rate rising too fast. It was a hard diagnosis to hear, but it helped to understand why her panic attacks were so severe and debilitating. She later got frost bite, which unfortunately caused Chronic Regional Pain Syndrome. Thankfully, she has found some relief with the help of physical therapy and a spinal cord stimulator that helps control the pain in her legs.
Jenna's hobbies include going to the dog park when able, hanging out with friends, and writing, almost always in her hammock!! She is writing a book about her experiences in the past two years, and it is something she really enjoys doing!
Jenna has a loving lifesaver service dog Paxton that keeps her strong and going! She saves her life during her medical episodes and she keeps her safe all the time! She also has the best support system from her friends, who help keep her mind off the pain with makeup, facetime, or just relaxing!
Her goals and hopes for the future are to get her mental and physical health where it needs to be to go back to school, and then hopefully become a public speaker and create a nonprofit related to service dogs! Jenna loves helping others, and if she can do that as her job in the future, it would make her heart so full.
Congratulations, Jenna! We are so happy to honor your strength this month! Thank you for sharing your story!
July 2019: Faye
Our warrior for July is Faye Bird! Faye is 21 years old and is fighting Anorexia Nervosa, body dysmorphic disorder, self-injury, and severe anxiety. She has previously struggled with Major Depressive Disorder and dissociation. Faye has been struggling with other mental illnesses since she was twelve, spending a third of her life in treatment centers and hospitals before the age of nineteen.
Despite her battle, in recovery, for the first time, Faye has begun to find hobbies and passions! These include modern dance, rugby, drawing, hiking, writing poetry, laughing with friends, and reminding those she cares for how grateful she is that they are in her life!
Faye says, "When times get dark, as they always do sometimes in this life, I remind myself of two things; first, that I am never truly as alone as I feel, and second, that I have survived so much and I undeniably can survive this too. I remind myself that it was the hard moments thus far that have shaped me into the compassionate, deeply-feeling human I am today, and these continued dark times will only make me stronger, more empathetic, and more grateful for this life."
For a long time, Faye struggled thinking about her future, but now she says her life is filled with hope! Faye hopes to one day become a therapist and would love to write a book and publish a book of poetry. She hopes to create small change that lifts the voices of others which might have otherwise been lost.
Faye began sharing her journey on a blog last year (that she says you've probably never heard of, as she had about seven followers), and now she shares her story on Instagram (@fayebirdy88) because she has realized that there is no shame in our stories! There is no shame in the struggle, or the darkness, because the risings she has seen in others have been miraculous. She realized that if she had the power to just make one person feel less alone, it was her duty to do so!
Faye is an absolute inspiration in her own recovery and the desire she has to give back to others! She is truly embodying all it means to be a warrior by bringing hope into her own life and spreading it far and wide! We are so excited to celebrate her this month! Check out her page!
June 2019: Zi
This month's warrior is Zi!!
Zi has Crohn’s Disease which is a form of inflammatory bowel disease. He was diagnosed when he was 17 but had spent the whole year before experiencing awful symptoms.
In his free time he plays football (soccer), goes to the gym and sees friends whenever he can.
Zi has a great support system in his family and friends. He relies on lots of bed rest, a good binge-worthy series on Netflix, and mint tea to get him through the flare-ups.
His health goals are to continue to remain in remission, hopefully becoming medication free, while his career goal is to get involved with medical research.
Zi runs a social media campaign called The Grumbling Gut. He started to blog about his experiences with Crohn's disease and had received so many questions from people asking about the disease, and also from people who already had it wanted more information. He then dedicated his social media to raising awareness and providing education about IBD. Zi thought of the name The Grumbling Gut because what else could describe his gut so perfectly?!
May 2019: Evie
This month's warrior is Evie! Evie had Hodgkin’s lymphoma cancer and has now been in remission for a few years. Since finishing treatment, however, all the toxins from the chemotherapy have gotten to be too much for her body. Her treatment has left her with chronic pain and reliant on a wheelchair to get about.
Evie is a creative person, who likes drawing and crafts. She also enjoys horse riding! She credits her inspirational friends and family for keeping her strong and getting her through the tough times.
Evie's long term goal is to get out of her wheelchair on the daily and work on walking some distance. She would also love to get into school more regularly.
We're so happy to have Evie as our May Warrior of the Month and can't wait to celebrate her strength all month!
April 2019: Katie
This month's warrior is Katie Knight! Katie is a fierce warrior who is fighting cerebral palsy and has recently undergone major surgery on both legs this past summer. Going through all that she has in the past year has taught her so much about herself and the world around her. She is incredibly thankful to have an amazing support system of family and friends who she credits to helping her fight! She focuses on getting stronger every day and that progress keeps her going!
In her spare time, Katie loves to sew, write, draw, and hang out with friends!
Katie plans to get her undergraduate degree in biomedical engineering and a masters in prosthetics/orthotics. She is ready to make the most of her “new legs” and the incredible opportunities she has been given throughout her life! We all cannot wait to see what the future holds for her!!
March 2019: Megan
This month, we are proud to feature Warrior Megan! Megan struggles with multiple chronic illnesses that leave her with constant pain, fatigue, dizziness, and shortness of breath. The former dancer now relies on a walker and wheelchair to get around, but she continues to fight and maintains a positive outlook by choosing to focus on all she can do, instead of what she struggles with. Megan has a talent for graphic design and animation, which she uses to express her creativity and bring her drawings to life! In school, Megan is a straight A student, a year ahead in math, and was recently inducted into the National Honor Society--despite having to miss significant amounts of school for doctors appointments and treatments!
Megan's mom, Shelby, says "she is the bravest, strongest, and smartest girl I know. She is a true warrior and I am so proud of her. I feel so blessed to be her mother. She has a heart of gold and is a true inspiration to everyone". We agree, Shelby!! Megan is a true warrior!
Feburary 2019: Abby
Abby is this month's Warrior of the Month and she is a true warrior! She is battling lactase intolerance, EDS, POTS, MCAS, PNES, Myofacitis, and Dysautonomia, but despite her challenges, Abby continues to smile every day and push through the battle like the warrior she is! Abby has a positive outlook on life and tries to help others whenever she can. She loves sharing her story in the hopes to raise awareness and help others by making sure they know they are not alone! She was even recently featured on The Mighty! She is her own #1 advocate and even helps to teach her doctors about some of her conditions they are less familiar with. She knows her life may be a bit different, yet she continues to be the amazing person she is! Her mom says, "She is my hero and deserves to be the Warrior of the Month, as she is a daily warrior!"
January 2019 : Ashley
Ashley is our first warrior of 2019! She is the true definition of a warrior fighting autoimmune Dysautonomia, POTS, IBS, Factor 5, and Neurogenic Bladder daily, but still managing to keep a smile on her face! She even brings joy to other sick kids by making care packages for them at the children's hospital where she receives care. She has also donated toys, books, movies, games, and blankets to the hospital as well! It is incredibly special for her to work so hard to give back to others when she herself is fighting her own battle. Ashley has been through so much in her 17 years of life, but continues to fight every single day and doesn't let anything get her down! Not only does she fight for herself, but she fights for others like her going through similar battles. Ashley's mom says she is her best friend and is extremely proud of her and everything she accomplishes every day. Her mom says "she has the biggest heart and she fights like a warrior every single day". It is clear to us that Ashley truly lives her life fighting like a warrior and we are honored to feature her this month.
Decmeber 2018: Jacquie
Jacquie was nominated this month by Dysautonomic Abby. Jacquie is such a great example of a true warrior! This past month she has received a major surgery but has remained strong through it all and has continued to inspire others during this extremely difficult time. Despite the multiple chronic illnesses she has, Jacquie doesn't let them get her down and always has a smile on her face! She is such an incredible warrior for so many reasons, but she is truly special because even during her worst flare days, she continues to fight like a champ, make others happy, and let fellow warriors know they are not alone. Jacquie is admired by many, especially Dysautonomic Abby. Abby says that Jacquie 100% deserves the December Warrior of the Month and we couldn't agree more. We are so excited to feature her as this month's warrior!
November 2018: Trina
Trina is the true definition of a warrior! She has been through so much and continues to go through so much, but never fails to have a smile on her face. She is always there whenever someone needs a shoulder to cry on or an ear to rant to. She is such an inspiration to many and rarely ever shows the struggles she faces daily. She is such an amazing, down-to-earth person, and has such the sweetest soul. She continuously posts inspiring and positive quotes on her Instagram (@katrinasbrain) to help anyone if they are having a hard time or feeling bad about themselves. She always reminds people that they are never alone in their fight and their journey. We are so excited to be featuring her this month as she continues to show what a true warrior is!
October 2018: Courtney
Courtney is the definition of what it means to be a warrior and deserves to be this month's Warrior of the Month. About 5 years ago, she received her HPV vaccine and, shortly after, became sick. She has multiple chronic illnesses and autoimmune disorders. Despite being sick, she has such a positive outlook on life and inspires so many people, including all of us at Fight Like A Warrior. Courtney says that being sick has definitely made it hard for her to love the body and skin that she is in and has robbed her of her teenage years. Even though her illnesses have taken so much from her, she believes that it has also given her so much and has shaped her into who she is today. She says she doesn't think she would be the person she is today without them. She says that being sick has made her look at life in a positive and appreciative new perspective and has caused her to learn life lessons before everyone else, like what true friends are. She believes that it has shaped her into the kind, genuine, and optimistic person she is today. She believes that if you can't find the sunshine, then be the sunshine. This is truly what she is, a ray of sunshine. She is so kind and helpful to everyone that she encounters. I am so proud to be able to feature her as this month's warrior because she totally deserves it.
September 2018: Dani
Dani is this month’s amazing warrior. There are a lot of things that make her stand out as a warrior. She has been through so much in her 17 years of life and still lives everyday and fights one day at a time. When she was 2 1/2 years old, she got diagnosed with an auditory processing disorder meaning that she wasn’t able to process things as easily as other kids around her. Unfortunately, she was diagnosed too late to use the early childhood program, which caused a lot of bullying in elementary school from kids her age. She says “I struggled to fit in and communicate. And I still do”. The bullying didn’t stop in middle school and actually was worse than ever. She started self-harming and was eventually diagnosed with anxiety and depression. She was put on medication that was supposed to help with these disorders, but only made them worse. In 2017, she tried to take her own life. Since then, she has been diagnosed with mood dysregulation disorder after relapsing in self harm. Dani has dealt with so much and is such a strong individual. She is so amazing by being able to deal with all of this and still fight every day and live her life. She is a true fighter and a mental illness warrior. She inspires all of us at Fight Like a Warrior, as well as many others. We are so happy to have her as this month’s warrior.
August 2018: Danielle
This month's warrior is the amazing Danielle. Her friend Christina nominated her because she has always expected her for who she is despite her physical disability. Christina says that Danielle always excepts everyone for who they are and is able to focus on the important things in life. Danielle battles her own chronic illness, Cushing's Disease, but still takes the time to provide support and mentorship for others facing her same disease. She advocates for people with the disease, she does fundraisers for walks, and she she provides peer support. She inspires everyone she meets and is such a selfless person. She has a goal in life to help others, even though she battles so much herself. She is what it truly means to be a warrior and we are so proud to be able to feature her this month! She is incredible!
July 2018: Carrielee
This month's warrior is Carrielee and she is truly incredible and inspiring in every way. She is the picture of what a true warrior is. She battles so much on a daily basis, but continues to live her life and enjoy it to the best of her abilities. She battles bipolar depression, sever anxiety, panic attacks, self harm, a sever eating disorder, severe PTSD, and gastroparesis. She is also suspected of having Fibromyalgia, Chronic Fatigue Syndrome, and EDS. She has had multiple hospital stays, outpatient visits, tests, and treatments and she continues to stay strong. She enjoys music, is really strong in her faith, and enjoys going to church. She would love to pursue a career in student ministry in her future, which keeps her going in life with hopes of being healthy enough to go back to school. Despite everything she deals with on a daily basis, she still remains strong and inspires everyone that she meets. She is amazing in every way and we are so glad to be featuring her this month!
June 2018: Kierstin
This month's warrior has been through so much and is what it truly means to be a warrior. When she was 13, she was diagnosed with Endometriosis. At 15, she was diagnosed with scoliosis. Age 16 came with the diagnosis of chronic migraines, and, finally, at her current age of 18, she was diagnosed with adenomyosis. She had a partial hysterectomy in March to help with her adenomyosis and is hoping that it will give her her life back. She has been through a lot in the past 5 years, but still continues to have a good attitude and a good outlook on life. She is starting college in the fall on almost a full ride scholarship and is going to study to be a medical missionary overseas. She is so inspiring and so amazing in every way. We are so glad to be featuring her as this month's warrior, she truly deserves it!
May 2018: Emma
Emma is the definition of what a true warrior is. When she was 12 she was diagnosed with osteosarcoma of her right femur, which is an aggressive bone cancer. She had to endure 9 months of intense high dose chemotherapy. She also had to have 5 surgeries to remove the cancer from her leg and the metastasis in her lungs. She had a rare procedure done on her leg, called a rotationplasty, which removes the cancerous knee area and saves the remaining healthy portion of her lower limb. Her ankle sits backwards in the socket and functions as a knee joint. This surgery has allowed her to walk and do gymnastics again, even with a prosthetic leg and has made everything easier for her. She is now able to do flips and live her everyday life. He story is truly inspiring and she is such an amazing warrior. She wants to show others that anything is possible if they set their mind to it and that's exactly what she is doing. She inspires everyone at Fight Like A Warrior, as well as everyone she comes in contact with. She is incredible!well as everyone she comes in contact with. She is incredible!item about? What makes it interesting? Write a catchy description to grab your audience's attention...
April 2018: Justin
Justin has been through a lot in the past two years, yet has approached his challenge as a warrior! We are so happy to be able to honor his strength and bravery by celebrating him as this month's Warrior of the Month! In November of 2016, he was diagnosed with testicular cancer at the age of 25. Despite his struggles, he is a fourth grade teacher and founded a website called aBallsySenseofTumor.com. He created this site to share his story and spread awareness about testicular cancer, as well as men's health in general. Testicular cancer isn't talked about enough in today's society, so his hope is to bring more awareness to this disease and prevent other men from going through the same battle. He believes that knowing someone who is going through cancer can help make it more real to men who might not otherwise be concerned about their own health. It is incredible how Justin is trying to raise awareness for a disease that could affect any man's life and how he has moved past his own story, in the hopes this doesn't have to happen to anyone else. He is truly an inspiration to everyone he meets! Justin touches so many people by sharing his story of determination and courage! April is Testicular Cancer Awareness Month, so we are more than happy to feature him during this important time! We hope casting a light on Justin's story will help spread more awareness for this disease, especially this month! Justin is a true warrior and we are beyond proud to announce him as our Warrior of the Month!
March 2018: Cristina
This month's warrior is Cristina! Her friend Danielle states that "she is the TRUE definition of what a real warrior is". Cristina has a rare and degenerative disorder known as spinal muscular atrophy. She has been in a power wheelchair since the age of three, due to her limited mobility. Despite her struggles, she continues to remain positive and has a blog called Beautiful Complicated. In this blog Cristina states, "to say that my life is unusual is an understatement and I feel a growing need to bring awareness to chronic illness. Many people don't understand what my life is like and what obstacles I face everyday, mostly because up until now I've been too scared to let people in". Cristina truly is amazing and hopes to be able to shed light on her illness, as well as others, and show the world how truly incredible she and other warriors really are. She inspires everyone that she encounters and helps them through their darkest days. We are so honored to be able to feature Cristina as this month's warrior!
February 2018: Jude
February's Warrior of the Month is little Jude! Jude proves that big warriors come in small packages! He is a strong 4 year old boy who was diagnosed with Acute Lymphoblastic Leukemia a year ago. He has already gone through so much treatment since being diagnosed and still has two and a half years to go. Even though treatment has been rough on him, he still continues to push through everyday with a smile on his face. He shows true courage and strength, which is incredible, especially for someone his age! His aunt says, "I call him my hero and would love to see him recognized and celebrated for the warrior he truly is"! Keep up the fight Jude!
January 2018: Katie
January's Warrior of the Month is truly inspiring and embodies everything it means to be a warrior. Katie battles many chronic illnesses, some of which include Dysautanomia and Amplified Musculoskeletal Pain Syndrome. Despite the multiple challenges she has faced in her own life, she doesn't forget about those fighting around her. She gives back to the hospitals in her area, as well as the Ronald McDonald House by hosting toy drives and making chemo bags! Not only does she help sick and injured kids living in the hospital or the Ronald McDonald House, but she also chooses certain families to give back to as well. She has a Facebook Page called Smiling While Sending Hope (https://www.facebook.com/Smiling-While-Sending-Hope-561096004224670/), which shows many different amazing care packages that she has given to those in the hospital. As if all of these acts of kindness weren't enough, she also volunteers with an organization called HealthBeMe and just helped put on a party for teens with chronic illnesses. There seriously isn't anything that this girl can't do. She is so incredible and inspires so many people daily. We are pleased to be able to name her as our Warrior of the Month for January!
December 2017: Adeline
Adeline is the definition of what it means to be a warrior. She is only two and has already been through more in her short life, than most people will experience in a lifetime. Her story began when she was born at just 26 weeks. She was already a fighter! She had NEC at 3 weeks old, intestinal blockage at 3 months old, and malformation and volvulus at 6 months old. She is TPN and GJ tube dependent and is about to have her 9th surgery along with a possible diagnosis of Cerebral Palsy. This little girl has been through so much and still continues to fight. Despite all of her challenges, she never fails to smile and light up the lives of the people around her. Her laugh is contagious and her love of life is beyond admirable! She is a true inspiration to many and shows exactly what it means to be a warrior. We think Addie is truly is incredible and has already brought so much love and light into the world!
November 2017: Felicity
This month's Warrior of the Month is Felicity. Despite facing such a challenging battle, she remains strong. She has 13 chronic illnesses, but doesn't let them get her down. Her sister says "I have never met a more resilient spoonie. She never lets anything hold her back, no matter how much mental or physical pain she is in. She acts in plays, she dances, she is a full-time student at a University and she runs her own dance blog, called Dancing Through Life". Despite the obstacles she may experience, she doesn't let them hold her back and keeps pushing to follow her dream of becoming a Dance Movement Psychotherapist. We cannot wait to watch her dreams come true! She is what it truly means to be a warrior!
October 2017: Sara
Sara is such an amazing warrior! She battles many chronic illnesses daily, but still manages to keep a smile on her face and remain selfless towards everyone she meets. She volunteers for her school's special Olympics team and coaches special needs kids in all kinds of different sports. She is so kind to everyone she meets and shows her strength in everything she does.
September 2017: Claudia Martinez
Claudia is the definition of a true warrior. Everything about her screams inspiration. She is in her second year of medical school despite the many hospitalizations, procedures, and surgeries she has been through for her multiple illnesses. She wants to change the world for the better and that is truly incredible! She states "I have had to re-learn how to feed, bathe, and dress myself again with re-learning how to walk, but despite this I've never given up on my dream of becoming a doctor and I hope to inspire others to never give up on their dreams". Her determination and attitude are incredibly admirable, and Claudia continues to inspire those around her every single day!
June 2017: Chanel White
Chanel has always been a leader in the chronic illness community. Despite her own battles, she is constantly supporting others and helping them find their voice. Chanel speaks openly and honestly about her illnesses, which inspires others to fearlessly do the same. She completely embodies what it means to be a warrior!
May 2017: Starlette Atterbom
Nominated by Hannah Hodson, Starlette is described as, "incredibly strong, encouraging, and sweet! She selflessly offers advice and help to others in the spoon community. She also keeps the best attitude and lives her life with joy and adventure, despite the pain. Seeing the way she lives and travels encourages me to not wait to get better, but to live life now!"