Rhylie-
Imagine a child watching with envy while other kids do things that they can’t do. Imagine missing out on a normal childhood because of hospital visits, treatments, and side effects. Imagine living in fear of the sun. That’s been Rhylie’s reality. Rhylie was diagnosed at the age of two with juvenile dermatomyositis.
In some cases, swallowing and breathing can be affected, stiff and swollen joints can occur, and Rhylie experiences this sometimes. Rhylie developed a contracture which is a shortened muscle that causes a joint to remain in a bent position that causes her to not be able to walk. Rhylie also had calcium deposits that developed under her skin due to severe muscle damage. Since the condition has no cure she receives treatments to prevent her from losing her mobility once a month with no expected date of when she will completely be finished. We are in year 11 of treatment and remission is nowhere in sight. Doctors had gotten her disease under control, but her condition flared in 2019 and recently flared again in 2024. She is currently receiving IVIG as a treatment for her juvenile dermatomyositis. With all the different medications and the disease itself she has developed Type 2 diabetes and a lung disease called Bronchiectasis. Bronchiectasis is when the lungs’ airways that’s irreversible become damaged making it hard to clear mucus in which she is prone to having multiple cases of pneumonia. She has to wear a cpt vest to clear mucus from her airways in her lungs. The doctor refers to her overall conditions as her body is writing history itself with no explanation and that she may be one of the children who will remain on treatments for the rest of her life. Throughout it all you will always see this angel smiling. She’s braver than we believe, stronger than she seems, smarter than we think, and twice as beautiful as we’d imagine. God made her beautiful.
Ezra-
My little JDM warrior’s name is Ezra. He was diagnosed at age 3.5 and he is now 5. His journey started with the loss of mobility and skin involvement as well. We were admitted to Children’s Hospital of Orange County and stayed for a week running multiple tests and labs until diagnosed. He went home with five medications and IVIG treatments every 4 weeks.
Thanks to Cure JM I was able to see that he was not alone. We joined the Walk Sttong 2024 event, where he got to feel so special; it was all about him. We are enrolled for 2025 as well. We have had a few scares and have had to visit emergency rooms a few times, but after tests and labs were sent home. He is now only on two medications and still receives IVIG every six weeks, which might be changing back to every 4 weeks. Some days are good and others not so much. Ezra has a big personality and he is a brave little man! Nothing is holding him back; he truly a warrior in my eyes!
Alissa-
Alissa Weisman was a boisterous healthy two-year-old when she was felled by juvenile dermatomyositis. Her story from there followed a well-worn path: A brush with death after a rapid decline, a long slog back to a relatively normal childhood, then brutal relapses in her teenage years that weakened her muscles and self-esteem and damaged her digestive tract so badly that she slipped into anorexia. There was the constant cycle of medications, dose changes, infusions and doctors’ appointments that any Cure JM parent would recognize.
Then after Alissa went to college, she decided to get healthy – if not cured. She took up power lifting to build back muscle mass that had deteriorated over years of inflammation. She focused on areas of her body ravaged by calcinosis. She began mountaineering and serious backpacking, climbing peaks over 14,000 feet. And she challenged her doctors to understand juvenile dermatomyositis in a more holistic way, to treat her health, not just her disease.
Alissa still has JDM, still continues a regimen of immunosuppressants and, far less frequently, infusions of immunoglobulin, but she is healthier and happier than she has been since that diagnosis came at age two. And she would like all JDM kids know they have far more control over their lives than they might be led to believe.
Aspen-
Hello, My name is Ashley Kinsey, and I am reaching out on behalf of my brave daughter, Aspen Dean, who is 11 years old and was diagnosed 9 months ago. She has shown incredible strength since her diagnosis, and we hope you will consider us for this opportunity. We would also be thrilled to collaborate with your organization through public speaking engagements, volunteer activities, walks, and any other opportunities that may arise. Since learning about her diagnosis, Aspen has been working on her platform, AddyCaresForRares, and she is eager to advocate for children with rare disease.
Last year, I competed in my very first pageant. It was an exciting and magical experience, and I couldn’t wait for the next one. I started preparing, but then something unexpected happened. Little bumps appeared on my hands, I felt extremely tired all the time and I began to lose my hair. My parents took me to the doctor, and after weeks of testing , I was diagnosed with a rare autoimmune disease called Juvenile Dermatomyositis, or JDM.
Receiving my diagnosis felt like a huge weight had been placed on my shoulders. I had to see many doctors, undergo numerous blood tests, and start infusion therapy. But through this journey, I’ve learned that no matter what’s happening inside my body, I must keep moving forward. I might have a few scars and some facial swelling from treatments, but standing before you today, I know that I am still beautiful, inside and out.
This experience has taught me the true meaning of strength and resilience. It’s not about never facing challenges; it’s about how you rise above them. With determination and self-belief, you can overcome any obstacle.
Liam-
Liam Warr has been living with a diagnosis of JDM for 13 years now. His first symptoms appeared many years earlier, but were misdiagnosed; as is often the case for JDM kids. His treatments began at the age of 4 1/2 and although he never reached remission and is still taking his daily medications, he is living a beautiful and active life. Liam’s family have been an active fundraiser for Cure JM since his diagnosis in 2011, and held a run called Liam’s Run which raised over $8,000 for the organization. They participate each year in the Giving Tuesday challenges and have walked for Cure JM.
Liam turned 18 earlier this month and will be graduating from high school this May. He is looking forward to college in the fall, and will be transitioning from his Pediatric care of his Dermatomyositis into adult care in the fall as well.
Each step of the way Cure JM has been a big resource for his parents and his doctor who he has been with since he was 4 1/2. Although JDM drastically changed the trajectory of his life, he has developed more responsibility in managing his disease, learned how to advocate for himself at school and work, and has a level of empathy for others a lot of kids his age wouldn’t understand. JDM is something he will always have to manage, but it doesn’t define who he is and what he is capable of doing. The future is bright for this Rare Disease fighter!
Hannah-
I want to share some of my story in honor of Rare Disease Month. I was diagnosed with juvenile dermatomyositis in the summer of 2008, while on vacation with my family. I was five years old. After my diagnosis, I was started on heavy steroid treatment, IVIG, and chemo. I became extremely weak; a painful rash covered most of my body. At the start of that summer, I was an athletic kid who played almost every sport you could think of. By the end of the summer, I was confined to a wheelchair. I had lost the ability to walk, talk, move, and eat. Over the next few years, I had to learn how to do it all again. Because of my diagnosis and the intense treatment, I developed other health conditions over the years. In 2022, my JDM finally went into remission. It’s crazy to think that between 2008 and 2022, I have taken around 700 hundred chemo shots, around a thousand IVIG treatments, hundreds of steroid treatments, thousands of oral medications, 100 rounds of Subcutaneous IG, 68 surgeries, countless tests/procedures, and many physical/occupational therapy sessions.
It’s been 16 years since my diagnosis, and I have exceeded the expectations of my doctors. This month, I will be 21 years old. I am a junior at George Washington University studying Psychology and Criminal Justice. I am also currently training to run a 5k this summer. I share my story because when I was first diagnosed, I felt so alone. I didn’t know anyone else with JDM until 2018 when I found CureJM. This is why I share my story, so no one else feels alone because we are not alone. I won’t ever stop sharing my story until we find a cure.
Annie-
Annie was diagnosed with juvenile dermatomyositis in January of 2022 after several months of doctor-hopping and no real answers. By the grace of God, we fell into the hands of an orthopedic doctor who saw Annie and was finally able to connect the dots.
So let’s rewind, in the spring of 2021, after spending an afternoon at a baseball tournament, Annie developed a bright red rash across her cheeks. It wasn’t a typical rash, and continued to progress, despite numerous creams and lotions, and a trip to an allergist. During this time, Annie’s gross motor skills began backpedaling. She could no longer do things she once did, and certainly wasn’t behaving like a normal 2-year-old. She was very clumsy; the slightest bump would send her down. On top of that, she appeared to have no real core strength to help break the fall. Annie was left with many bumps and bruises. In a few short months, she had lost all ability to pull herself up. If toys were dropped, she’d ask me to pick them up for her. There was no running, little to no playing, and a constant need to be held. She just seemed sad and was truly struggling. My husband and I didn’t know where to turn. We were at the mercy of doctors who were completely unfamiliar with Annie’s condition. As her mom, and a mother to two other healthy children, I knew something was desperately wrong.
In December of 2021, Annie underwent anesthesia for an MRI of her brain at the request of a local neurologist. The findings were normal and the following month we were sent to a pediatric orthopedic doctor to discuss possible hip involvement. This doctor will forever hold a special place in my heart, because for the very first time, I felt seen and heard. He immediately sprang into action and discovered Annie’s diagnosis, juvenile dermatomyositis. Regardless of not really knowing what was in store for us, the relief I felt was immense because I finally had an answer and a course for treatment.
Annie was met at Children’s Healthcare of Atlanta by a team of rheumatologists who began a plan of action to get her well and as quickly as possible. A three-day hospital stay was filled with an additional MRI, steroid IVs, blood work, and her first round of IVIG. Before we were discharged, Annie was already showing signs of improvement. I was amazed and so incredibly thankful.
Today, we are just over 2 years into learning, growing, and figuring this thing out. It has truly been a whirlwind of emotions. Looking at Annie, one would never know what she has overcome. She appears to be your average 4-year-old girl. She started preschool in the fall and has made so many new friends. She loves playing with her babies, jumping on the trampoline, wrestling her two older brothers, and putting on all the make-up and jewelry. She is equal parts rough and tough and the girliest girly-girl. She is quite literally the epitome of joy.
Annie has been off steroids for over a year. She still receives IVIG infusions, though now spaced to every 2 months as well as a weekly injection. I remind her as often as I can of just how strong she is and that whatever she sets her mind to, can be done! The sky is the limit for my Annie-girl!
Boris-
In 2014, Boris was 4 years old. He had just started kindergarten and suddenly he started having pains and his walking became increasingly worse. After 3 months and multiple examinations in the hospital, he was diagnosed with Juvenile Dermatomyositis (a rare autoimmune disease). Boris left the hospital in a wheelchair. The treatment started immediately- Prednisolone and Methotrexate injections.
Fast forward to 2016, Boris’ 1st time at a CureJM conference in Florida. Because there are few children with JM in the Netherlands, we came across CureJM via the internet. It was a very special and valuable experience to visit the conference.
In 2020, after 6 years of medication, hospital visits and physiotherapy, Boris was in remission and he is doing very well.
In 2023, we went to a CureJM conference again, this time in Washington DC. Boris was now 13 years old and met peers, struggling with the same JM issues as he was (another valuable visit to the USA for us). At the moment he is doing very well medically, few residual symptoms of JM, but always alert for signals that could indicate a flare. Still hoping for a cure!
