Join us in supporting Cure JM research for Harper
The past several months have been a whirlwind of blood tests, Doctor appointments, hospital visits, MRIs, and stressful phone calls with our insurance company. In February, we received a diagnosis that no parent wants to hear. There is an incredibly rare disease called Juvenile Dermatomyositis. Its short name is JM. It affects only 1 out every 1 million children.
The Rheumatologist called... Hi, it's Dr. Rubenstein. We brought Harper's case to the board. We are all in agreement that Harper has JM. We believe she's been in active disease for over a year and Dr. Wahezi would like to start treatment immediately. She will have the best chance of remission by starting daily steroids, daily hydroxychloroquine, weekly injections of a chemotherapy drug called methotrexate, a weekly chemoprotective drug called leucovorin and potentially IV pulse steroids or 8 hour IV immune globulin infusions in the hospital.
I knew they were doing the work up for this but to hear it out loud, spoken to me, her mother. YES...your daughter has this rare disease and there is no cure. There are no FDA approved drugs for this disease. Treatments are largely borrowed from childhood cancer treatments and, though lifesaving, these treatments have debilitating side effects. Our perfect little baby girl in a body that's not doing all the things it's supposed to do. It feels so unfair.
You can imagine the simultaneous heartbreak and rage that Jason and I felt going forward.
But, forward we go... because where else CAN we go? The medication is yucky but she does a decent job taking it every morning. She doesn't love putting sunblock on every morning but again, she manages. She is having some side effects to the medication. Mouth sores and tummy pain and the steroids make her pretty emotional and a tiny bit hairy! She has developed a fear of needles from the blood draws. It takes two people now, plus me. She cries and kicks and yells mommy please don't let them do it, please don't let them touch me! She is 3. I want to protect her. I want HER to hear ME say the words STOP. I want to respond to her cry for help with what she perceives as help. But I cannot. Because forward is the only way. They are helping her, even though she doesn't understand it. Until it's over and princess stickers appear. Then the nurse becomes a friend. We have many new friends, her and I. We didn't ask for these new friends but we are grateful to have them on this journey. Doctors, nurses, social workers, child life specialists, the pharmacist, our insurance advocate, and of course other parents and patients. Harper's case is considered somewhat mild in comparison to other newly diagnosed children. Some struggle to get up out of a chair, some are sore and weak and can no longer go to school, some can no longer play the sports they once loved, many struggle with mental health, some are suicidal. This is the darkest side of rare diseases. The mental toll it takes on such young children. Reading about parents' hearts splitting in two with worry for their baby. This is what I see when I hop on the JM FB group to ask about sunscreen or a new side effect. The CURE JM foundation refers to our kids as JM warriors. In the past 6 months I have watched these kids and my own, grab ahold of their hearts and walk into battle. I have heard the stories of going to war with their bodies. The triumphs and setbacks. The hospitalizations, the new diagnosis, the medicated remissions, the return to sports, the return to school, the failed treatments, the new plans, the new Doctors. It really is a war for all of these kids. Some have more weapons than others, With JM every child's disease path is unique. You feel camaraderie yet you also feel alone in your fight. I know one thing, if it weren't for the children before Harper, we would not be where we are in terms of progress. The cases, treatment plans and research that came before her, will pave the way to any progress she makes. We are incredibly lucky that there are a handful of Rheumatologists in America that specialize in this disease.
There are only 20 in the Cure JM clinical care network and that includes Doctors from other countries. But still, there is no cure for JM and no FDA approved medications. For Harper to thrive we need funding for clinical research. There are medications out there that can help her and children like her but they need to get to clinical trials. Because JM is so rare, research progress is ONLY made possible by family and friends like you. Please consider making a donation to my fundraiser link in the comment section. Right now, every donation is matched by a generous sponsor. There is no donation too small. Thanks for taking the time to read through this and supporting our little JM warrior.
Gifts are tax-deductible and will be matched dollar-for-dollar by the Coffey Family Match. Every dollar makes a difference!
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- Checks can be made out to Cure JM and mailed to Cure JM, P.O. Box 45768, Baltimore, MD 21297 with “Harper” in the memo.
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