By Kathi Bliss
Imagine watching your once-vibrant toddler deteriorate before your eyes.
Watch as your four-year-old loses muscle tone in her face, becomes too weak to walk on her own, and chokes when she tries to swallow food or juice.
Then, imagine doctors finding the reason, and learning that a disease you’ve never heard of, with no known cause or cure; a disease you know nothing about, you don’t know how to fight or even how to pronounce, is going to steal your daughter’s childhood.
Imagine the “new normal,” as you swap play dates for doctor visits, medications for snack times, and hospital stays for family vacations.
How could you ever call it a blessing?
Two Caldwell County families have done exactly that, as they grapple with the potentially devastating effects of Juvenile Dermatomyositis (JDM), an under-recognized and rarely-discussed autoimmune disease that affects between 1 and 5 million children every year.
The “Thompson*” family began their journey with JDM eight years ago, when they noticed that their youngest daughter was having more trouble walking than the average toddler. She started having trouble eating and drinking, and wasn’t able to brush her hair, or even lift her arms over her head.
Over time, the Thompsons received the diagnosis of JDM, and after the initial shock, began to use their family situation as a platform to raise awareness of JM, eventually partnering with the Cure JM Foundation to inform families about the diagnosis, and to support families and children fighting the disease.
Instead of calling the diagnosis a tragedy, they decided to make it an opportunity.
Some might say the Thompson family’s life is dictated by Abbie’s disease. They set alarms for a litany of daily medications, some which can’t be mixed, others which must be taken with food, and yet others that have to be taken on an empty stomach. They structure their days around routines of medications and sunscreens, doctor visits and test.
Still, they have built a relatively normal life. They still participate in 5K races throughout Central Texas; instead of competing, they advertise JDM, and answer questions along the way, educating spectators and other racers about Abbie’s diagnosis and the Cure JM Foundation.
They travel, just like other families; they just have to take along sunscreen and extra long-sleeved shirts and long pants, because exposure to sun can trigger autoimmune responses that aggravate Abbie’s condition.
Every four weeks, they schedule an 18-hour visit to Dell Children’s Hospital, so Abbie can receive the IVIG treatments that keep her going.
And while they pray every day for remission, they understand that this could be life… Forever.
For Abbie, though, that’s okay. A normal “tween” and accomplished photographer, she has a boundless sense of humor and a sunny attitude about the only life she’s ever known.
“I know it sounds ridiculously weird, but I absolutely love having JDM,” she wrote in an essay for a photography contest. “… There are so many places I never would have been, things I never would have done… people I never would have met. Don’t get me wrong, there is a bad side to JDM… but I still think JDM has been a blessing in disguise.”
The Cure JM Foundation hosts an annual conference in Chicago each July, in conjunction with the Chicago Half Marathon. While the Thompsons will participate in the conference as “virtual volunteers,” a team from the Cure JM Foundation will participate in the marathon to continue raising awareness of this life-altering disease, with which 1,000 American children will be diagnosed this year.
To learn more, or find out how you can help, visit www.curejm.org.
*At the request of the family involved, the names in this story have been changed to protect “Abbie’s” anonymity.