Posted: Monday, August 11, 2014 11:45 am | Updated: 3:58 pm, Mon Aug 11, 2014.
By SUZANNE CASSIDY | Staff Writer
Donya McCoy is accustomed to fighting on behalf of her daughter.
But a couple of weeks ago, she found herself in a fight for her own health.
McCoy, of Elizabethtown, is the mother of Kennedy Stevenson, a 3-year-old girl who is just one of eight people in the world with an extremely rare metabolic disorder called S-adenosylhomocysteine hydrolase deficiency, or AdoHcy.
Kennedy is, as her mother likes to say, “literally one in a billion.”
When a Lancaster Newspapers story ran detailing Kennedy’s condition, and her mother’s quest to get medical care for her daughter, readers responded with a generosity that McCoy called humbling.
The offers to help Kennedy came just as McCoy was hospitalized with sepsis, a serious blood infection.
Girl’s story ‘struck my heart’
One woman, who doesn’t have a computer, called Lancaster Newspapers to find out how she could get a $50 check to McCoy.
A Lancaster County man, who asked to remain anonymous, donated $1,000 to a GoFundMe account set up by McCoy, to help with the expenses of caring for Kennedy after she undergoes a planned liver transplant at the Children’s Hospital of Pittsburgh.
Kennedy’s story “just struck my heart,” the man said, in a phone interview, noting that he doesn’t have a lot of money, but “for some reason, that hit me right between the eyes.”
“I wish I could give more,” he said. “I know it’s never enough.”
Two other readers came forward, asking if Kennedy still needed a liver donor.
Janet Tate, a registered nurse employed as a supervisor at Mennonite Home Communities, said she shares Kennedy’s blood type — O-positive — and would be willing to be tested as a donor.
She said she was moved by McCoy’s tenacious efforts on behalf of Kennedy.
“My grandson has cystic fibrosis,” she said. “I know how moms especially can really be involved in caring for their kids. … If there was anything at all that I could do, I wanted to do it.”
A friend of McCoy’s will be tested first to see if he can be a donor for Kennedy.
The little girl’s brain development, her muscles, her nervous system and her liver all have been impacted by her metabolic disorder.
She now can walk and run and say a few words, but her development has been significantly delayed.
Her physician, Dr. Kevin A. Strauss at the Clinic for Special Children in Strasburg, said he believes that a liver transplant will give Kennedy’s brain “the best chance to develop.”
Because of her enzyme deficiency, she’s now strictly limited to 20 grams of vegetable or fruit protein a day; her restricted diet keeps her on the brink of malnutrition.
Kennedy will be going to the Children’s Hospital of Pittsburgh later this month for a battery of tests to see if she’s strong enough for a liver transplant.
Kennedy would be the first person with her disorder to undergo a liver transplant.
Gearing up for ‘warrior mode’
The stress of her long journey to get Kennedy to this point caught up with McCoy on July 27, when she was hospitalized with a kidney infection that went into her bloodstream.
McCoy spent six days, on intravenous antibiotics, at Penn State Hershey Medical Center.
In dozens of interviews, McCoy never once mentioned that she has lupus, a chronic autoimmune disease that can be exacerbated by stress.
She explained later that she wanted the focus to remain on Kennedy.
“The fact that I haven’t flared sooner is pretty incredible,” she said matter-of-factly. “I really feel God did this – he forced me to take a break, or I wasn’t going to survive (Kennedy’s transplant). … I didn’t have any fight left.”
Kennedy was with her father, Nicholas Stevenson, while McCoy was hospitalized.
“She was having a lot of fun with her daddy,” McCoy said.
When McCoy was released from the hospital, her husband Josh confined her to the couch. She needed rest, he told her, adding, “I need you to go into warrior mode. You have one more big battle.”
McCoy said she just wants to get Kennedy “on the other side” of the transplant.
“I have to get strong and be strong for her,” she said.
On Monday, she said she was recovering well.
She said she was “so grateful” to everyone who had donated money, offered prayers, and had sent their good wishes for Kennedy.
Among them was a member of the Elizabethtown Moose Lodge, who told McCoy that the lodge’s Moose Riders would be taking part in the “Ride for Kennedy,” a benefit motorcycle ride that will be held Saturday, Aug. 30.
“Every little bit has restored my faith in humanity, that people care about and think about our little girl,” McCoy said. “She’s just so special and she just doesn’t even know it.
“We are so touched by all of it.”
Kennedy, she said, is “inspiring people, and I’m just so proud to be her mom.”
The “Ride for Kennedy” will begin and end at Jagged Edge Body Works, 505 N Market St., Elizabethtown. Registration will be from 9-11 a.m., and then it will be kickstands up at 11. The cost is $20 per rider, including a pig roast after the ride concludes.
The GoFundMe account for Kennedy is at http://www.gofundme.com/SavingKennedy