We are mamas running for a cure for JM (Juvenile Myositis), a terrible and rare autoimmune disease that afflicts Suzy's daughter, Mielle.
If you aren't familiar with Mielle's story, watch this 3-minute video.
A couple of months ago, I set up this page and talked about our hopes that Mielle would be medication-free in a couple of months. She'd been doing so well for so long that we took it as a forgone conclusion.
How quickly things change.
Last week at her appointment with her rheumatologist, we learned that her neck muscles are markedly weaker than they were in April. Her labs came back showing her muscle enzymes elevated. Her disease is flaring.
We're trying to keep it in perspective. At this point, we don't know if this will turn out to be a minor setback, or something else. We caught it early. It may just mean a higher dose and more time on the relatively innocuous (no side effects) medication that she has been on for the past several months. Her symptoms may not worsen. Or they might, and we might have to re-introduce additional meds.
Mielle still feels great and is unperturbed. Needless to say, her parents' hearts are breaking. But we march on, because what else is there to do?
So... nothing like a cold, hard dose of reality to reignite my fundraising efforts.
I'm running my 9th half marathon in just over two years on June 25. People often ask me if I ever want do a full marathon. I realized today that weathering the storm of this disease IS a marathon. (And someone sneaky just moved the finish line).
Please give to this most worthy cause if you can.
Healing energy and prayers for my family, and for all JM families, and for all families of sick kids are most welcome also.
UPDATE: November 3, 2011: We increased Cellcept, a powerful immunosuppressant and the last medication that Mielle was still on, and it seems to have kept the disease in check. The summer was more than a bit scary as we watched and waited to see what would happen, but all in all it seems as though this is a bump in the road, not a life-changing event. It does mean that "the road" will be much longer than anticipated... we just hit our 4-year anniversary of diagnosis, and we are now looking at a minimum of a couple more years before tapering off completely... if we don't hit any more bumps!! But Cellcept doesn't seem to cause Mielle any side effects, so other than actually having to take her dose twice a day, she's living a normal life. We are very grateful that we didn't have to add back any of the other more difficult medications. It could be better, but it could be much, MUCH worse, so we are grateful for how things are.
Cure JM (www.curejm.org) is a fantastic organization, providing information and support that truly changed the course of events for my daughter, as well as countless other JM kids. It funds major research initiatives for juvenile myositis, and is a completely volunteer organization. Your donation will be handled wisely and effectively.
(If you prefer to donate by check, please mail it to Cure JM Foundation, 836 Lynwood Drive, Encinitas, CA 92024. Be sure to write "Mielle" in the memo!)
training updates at www.mamajog.blogspot.com