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!
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.