Hi, my name is Amelie and I was recently diagnosed with Juvenile Polymyositis, an extremely rare autoimmune disease where my immune system is attacking my muscles.
I was always a very active kid before I started feeling sick. I loved to swim, play soccer and cheer. I also attended many events with my Girl Scout troop and trips with my family.
We first knew something was not right in the beginning of July 2018 when I began walking funny and was tired. I didn't play very much and I felt weak. My family thought I was just going through a phase and even nicknamed me "Lazy Panda".
My symptoms got worse in August. I had a hard time getting out of bed and I struggled to pull myself upstairs. I became weaker, out of breath and was in pain. I started cheerleading practice and I could not lift my arms above my head.
My family took me to the doctor where they did a lot of bloodwork and sent me to specialist, who thought I had Juvenile Dermatomyositis, a form of Juvenile Myositis (JM).
School was starting and I was going into 3rd grade. I was worried about going because my doctor told me I couldn't do any physical activity and had to stay indoors as much as possible. So I went on the Independent Study program instead.
At the end of August I had a MRI done. Once the results came back I was admitted to the hospital for a muscle biopsy and IV steroids. After 5 days in the hospital, I was released on oral steroids, vitamins and chemotherapy injections.
After a month and a half of my treatments (and lots of bloodwork!) I went to the doctor for a follow up. My bloodwork didn't improve and some got worse. My biopsy showed I have the more rare form of JM, Polymyositis. My doctor had to increase my dosage of chemotherapy injections and I also have to start monthly IV treatments.
Even though my life (and my family's too) has changed a great deal, we try to carry on as normal as possible. My mom is staying home from work to take care of me and is my primary caregiver. We spend our days doing school work and art. We also go to my brother's football practice and games. I also still go to Girl Scout meetings.
I am so thankful to have such an amazing support system. I am excited to start my team to raise money for the Cure JM Foundation. Please support my cause and sponsor Team Ame!
All proceeds benefit Cure JM Foundation, a non-profit dedicated to finding a cure for Juvenile Myositis
Raise $100 to earn a "Walk Strong to Cure JM" t-shirt, featuring a NEW design this year.
Southern California “Walk Strong to Cure JM” Family fun event and fundraising walk
Where: Griffith Park, Pettigrew / Crystal Springs
When: February 23, 2019
Time: Registration opens at 9:00 a.m., Walk and festivities 10 a.m. - noon
Join us for the 1st Annual "Walk Strong to Cure JM" featuring a one mile family fun walk, food, entertainment, games and prizes. It will be a fun family event for all ages.
This event is free and open to the public.
All proceeds benefit Cure JM Foundation, a non-profit dedicated to finding a cure for Juvenile Myositis, a life-threatening disease which causes the body’s own immune system to attack healthy cells and tissues. It can affect virtually any system of the body, the heart, lungs, skin, muscles, and more. And there is no cure....YET!
But with support from friends and family like you, we’re getting closer to better treatments and a cure.
Your support now will keep that momentum going.
Contact email@example.com for more information.