Lily Ayres is fighting the good fight, says her dad.
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, 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.
“When we went in for testing in July, they found that the pressures in her heart were too high. They couldn’t do the third surgery,” said her dad, Clifford Ayres. “She has a leaky valve, which she’s had since day one, and it’s getting worse as she’s getting older. Right now, it’s a waiting game.”
Doctors told Ayres they could possibly try to close the valve, but they don’t want to put Lily through the surgery because there is no guarantee that it would fix the problem.
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.
“Her pumping chamber has never grown,” Ayres said.
Ayres said a heart transplant has always been an option, but they were hoping they could delay it until Lily was a teenager.
“Eventually, we knew it would come; we were just hoping it would be later down the road,” said Ayres, noting that, according to what he’s been told, a successful transplant typically lasts between 10 and 15 years.
That means, Lily could be a candidate again.
“The more transplants you get, the less acceptance you have, and the higher your rejection,” he said.
Finding a suitable donor may be difficult as well, Ayres added, because both he and Lily are O positive, which is a harder blood type to match.
In the meantime, Lily is doing what she can to gain some strength through physical therapy.
“She’s pulling herself up by herself. She’ll pull herself up against her metal walker and walk across the floor,” Ayres said. “She’s really giving it a go.”
Lily also is crawling, although, Ayres said, “not like a regular kid.”
“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.”
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.
“She went as far as she could go with the feeding process,” he said. “Don’t get me wrong. She still tries to eat. But we changed her outcome as of now to fine motor skills. She’s learning to do more with her hands. She’s stacking blocks.”
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.
In anticipation of the added expenses for transportation and overnight accommodations, Ayres is selling raffle tickets. The winner will receive $5,000, and will be determined by the first official Pennsylvania Pick 3 Lottery number selected Jan. 1, 2018. Donation is $20.
In addition, a GoFundMe page also has been established at https://www.gofundme.com/49g5000.
“She’s stable. She’s fine for the immediate future,” Ayres said. “As long as there are no changes in her coloration or her eating habits, and she has no excessive diarrhea, her stats are good. If anything would change, they would move her up on the list.”
To purchase raffle tickets or for more information, call Clifford Ayres at 724-413-2059.