Our daughter was diagnosed this year with a rare autoimmune disease, called Juvenile Dermatomyositis, in which the body's immune system attacks its own cells and tissue. This rare disease affects approximately 2-4 children out of a million.
Despite our initial shock and devastation, we feel very fortunate to have happened to come across doctors that were actually aware of this rare disease and helped us get a quick diagnosis and treatment started. Due to the rarity of the disease, many kids go months or years without being properly diagnosed which can lead to irreversible effects.
For many children with JM, it's a challenge to simply stand up or sit down as the body attacks its own muscles. It and the medications that treat the disease can cause complications and be life-threatening. We count our blessings every day that A has responded positively to treatment and continues to function like a normal 8 year old girl (who gets daily meds, weekly injections and monthly lab tests).
BUT, I have no idea what the future holds for her. And for this I worry. I worry if we’re on the right treatment plan to getting her to remission. I worry if these strong medicines she is on will affect her organs, her bones, her growth, or other bodily functions. I worry that every time she falls, trips, drops something, feels pain, bumps into something, or is just plain tired that it might be a disease flare and not just something that could happen to any other person. I worry every day the sun is out (and that is a lot where we live) that she will be over exposed to the UV lights, that negatively affect this disease, and that this exposure will take us 2 steps back. I worry about germs, infections and what she gets exposed to now that her immune system is compromised. I worry about worrying, and worry about her seeing me get upset when reading about this awful disease and the kids that haven’t been as lucky as A.
I pray that she someday makes it to PERMANENT remission. That is the best we could ask for, because there is no cure. Even if she does make it into remission, and she will, I will FOREVER worry it might come back. And the only thing I want is to go back to just worrying about all the other normal stuff mom’s worry about… so please, help us find a cure by donating to Cure JM so I, and others in our situation, don’t have to worry at least not about THIS anymore and the kids can just be kids.
Cure JM Foundation is an all-volunteer non-profit organization which was created and is managed by families of children with Juvenile Myositis (JM). Cure JM Foundation’s mission is to provide support to families coping with JM, raise awareness of JM and fund research that will ultimately lead to a cure.
I am participating in Cure JM Foundation’s national fundraising and awareness event taking place in Baltimore, Maryland on October 12th and 13th.
Please consider DONATING today! No amount is too small, every dollar we raise gets us one step closer to our goal!
You can also mail your donation to:
Cure JM Foundation
836 Lynwood Drive
Encinitas, CA 92024
Corporate matching forms can be faxed to: