I came across this little girl’s story on twitter today and it broke my heart. She suffers from a disease called epidermolysis bullosa that makes her skin extremely fragile, causing it to blister and tear. It is hard for her to even move because her condition is so painful. And running and playing like other 10-year olds is out of the question because of the pain, as well as the potential for bumps and scrapes that could be devastating. Even hugging kids with this disease can be extremely painful for them.
The story hit close to home as I’m trying to get some of Miss Girl’s eczema flares under control after a vacation weekend where we didn’t stay on top of the daily antihistamines, bleach baths and lotions and potions. Even after years of dermatologists, steroid ointments, prescription-strength antibiotic ointments and mom’s hippie concoctions of probiotics, vitamins and herbs, she nearly always has scabs on her hands that hurt me just to look at. She’s a trooper, saying it doesn’t bother her. But she is probably just so used to those places being itchy, tight and painful that she doesn’t know how it would feel if they didn’t hurt.
Obviously, even at its worst, Miss Girl’s situation is nowhere near as bad as Ella’s. But as a mom knowing my child’s struggles and the constant effort it takes to keep her situation under control, I can’t even imagine how tough it is for this family — and how brave this little girl is. We are on a list to get miss girl into a trial for a promising new biologic that begins early next year. We hope this will make the difference for her. But for EB patients, there is no treatment, no cure and no hope in sight.
Ella’s video is part of a campaign by Debra of America designed to raise awareness about “the worst disease you’ve ever heard of” and drive funding for research by helping Ella play a game of virtual tag, since playing for real is impossible. Today, I’m thankful this campaign was brought to my attention for 2 reasons: the reality check on our own situation and a much-needed glimpse at the good in the world via everyone on social media who’s joining in to help a little girl’s dream come true.
What are you thankful for today? Each day during this month of thanksgiving, I hope to post a thought about something I’m thankful for as a reminder of how much I have.