“One-in-a-billion” child set for liver transplant after mom finds donor on Facebook
Donya McCoy found a liver donor for her 3-year-old daughter the new-fashioned way: on Facebook.
McCoy’s daughter, Kennedy Stevenson, of Elizabethtown, is one of just eight people in the world with a rare metabolic disorder.
A liver transplant could be the cure. Kennedy’s liver “match” turned out to be McCoy’s high-school classmate, Mike Thompson, now a Bethlehem paid firefighter.
Kennedy is scheduled for surgery Oct. 28, at Children’s Hospital of Pittsburgh. She will be the first person with her condition to have a liver transplant.
We all know Facebook as an online lounge and place to share what is going on in our lives, share ancient, recent and current photos, and post pet peeves but for Donya McCoy Facebook was a huge platform where she had the opportunity to post a plea to help save Kennedy; Donya’s three year old daughter’s life.
“I like to think I’m handling things exceptionally well, but as you can imagine, I’m terrified,” McCoy says.
Kennedy’s disorder, called S-adenosylhomocysteine hydrolase deficiency, or AdoHcy, affects her brain development, muscles, nervous system and liver.
But in many ways, she is a typical 3-year-old. Her current favorite word is “why.”
Kennedy, who was featured in two August Lancaster Newspapers stories, follows a restricted diet and takes supplements. Doctors hope the transplant will help regulate her metabolism and boost her brain development.
McCoy regularly updates 800 Facebook friends on Kennedy’s progress, so it seemed like a logical place to look for a liver donor. (Kennedy’s ideal donor is someone who is not related to her.)
“Okay Friends … here it is … the request of a lifetime,” she wrote in July. “Is there anyone out there who has O+ blood and would be willing to donate 25% of their liver to save Kennedy’s life? Trust me, I know it’s a lot to ask, I can’t even believe I’m posting this, but as a mother, I have to exhaust every option possible.”
McCoy had a few classes with Thompson at Bethlehem Catholic High School, but they weren’t close friends. Thompson, 36, of East Stroudsburg, wanted to help as soon as he saw McCoy’s post.
“It’s just something that I want to do,” he says. “I was put here on Earth to help people.”
The story of Kennedy Stevenson, a little girl with an extremely rare disorder, drew offers of help, even as her mother dealt with her own medical crisis.
After a round of tests, Thompson and Kennedy were cleared for surgery.
Kennedy and her family will go to Pittsburgh Oct. 22. McCoy plans to stay at the local Ronald McDonald House during Kennedy’s three-month hospitalization. Kennedy’s father, Nick Stevenson, and stepfather, Josh McCoy, will visit regularly.
Since Kennedy is so young, there’s no way to prepare her for the surgery. Her 4-year-old stepsister, Sissy, made a stuffed lamb to keep her company at the hospital.
“(Sissy) knows there are parts in Kennedy that are not working so good,” McCoy says. “Doctors can give her another part to make it all better.”
Thompson, his wife, 4-year-old-daughter and 2-year-old son have visited with Kennedy’s family a few times. He expects to spend a week in the hospital.
“My wife’s more nervous than I am,” he says. “Me, I’m just hoping it works for (Kennedy).”
Kennedy should be able to relax her dietary restrictions after the transplant, McCoy says, but doctors don’t know how it will affect her neurological symptoms.
McCoy finds comfort in knowing that CHP has performed the most pediatric liver transplants of any U.S. hospital. But she knows that something still could go wrong.
“I try not to go there, because it takes me to a dark place,” she says. “But I am a realist.”
McCoy says she believes that Kennedy’s journey is meant to help medical professionals learn more about AdoHcy so they can help other kids.
Kennedy’s insurance covers all medical costs for her transplant and Thompson’s surgery. The family’s gofundme page has raised nearly $11,000 so far, which will come in handy when McCoy takes a year off from her insurance-office job to care for Kennedy.
The family is extremely grateful for the community’s financial and emotional support. But McCoy says sometimes the stress of Kennedy’s illness and the outpouring of kindness — like cards handmade by a class of Lititz sixth-graders — can be emotionally overwhelming.
“It’s almost as if God knows when I’m hitting my breaking point, and he sends me a sign,” she says.
Riding on her husband’s motorcycle is the only time McCoy completely lets go of her stress and fear. Then she has no control, and there’s nothing she can do but hold on.
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