Local fundraising run for a sweet little girl, a little background about Lily
Lily Ayres is fighting the good fight.
And that’s a good thing, too, considering the 2-year-old Canton Township girl, who received an outpouring of support when she was introduced to Observer-Reporter readers in May 2017, is no longer eligible for the third of a three-part surgical procedure designed to create normal blood flow in and out of her heart.
Now, she needs a heart transplant.
Lily was diagnosed in utero with hypoplastic left heart syndrome, a congenital defect that affects a number of structures on the left side of her heart, preventing normal blood flow from her heart to her body.
Ayres said a heart transplant has always been an option, but they were hoping they could delay it until Lily was a teenager. In addition to her heart defect, Lily has Moebius syndrome, a rare neurological disorder that leaves her unable to smile, frown, blink or move her eyes from side to side. The inside of her cheeks, Ayres said, are connected to her gums, and since she cannot swallow, she is fed through a feeding tube in her abdomen. Until recently, Lily was trying to learn to eat in occupational therapy. But her treatment plan has changed, said Ayres, because she’s not going to progress any further. When Lily has her heart transplant, she will be hospitalized for up to three months, followed by a two-week stay in Pittsburgh near Children’s Hospital