Lily Ayres, at the ripe age of 2, has been fighting a rare disease ever since she was born.
Little Lily suffers from Moebius syndrome and because of it, she is physically unable to smile. This rare neurological disorder affects multiple cranial nerves which include facial nerves. This is why Lily cannot move her face. To learn more about this terrible syndrome, click here.
Lily has been eating from a feeding tube and to make matters worse, she suffers from a heart defect called hypoplastic left heart syndrome, which prevents regular blood flow from the heart to the body.
Today, she is no longer eligible for part 3 of a surgical treatment that would create regular blood flow in and out of the heart. As a result, Lily is in serious need of a transplant.
It has been a challenge finding an appropriate donor given that her and her father are O positive which has proven a harder blood match to seek out.
None of this will serve her leaky heart valve which Lily has had since she was born. The older she gets, the worse the heart condition grows.
After intense physical therapy, Lily is finally able to crawl.
“She drags her right side, and her leg is hooked underneath a little bit. I think it’s because she’s nervous,” Ayres said. “Her leg is crooked underneath, which is more snug for her. It’s easier for her to roll up on her butt.”
