The family of Cooper McElvain, or “Super Cooper” as his family calls him, is hoping for a life-saving blessing after experiencing multiple medical difficulties over the first several years of his life.
Cooper, 3, son of Allison and Wayne McElvain of Owensboro, was born in 2018 at Owensboro Health Regional Hospital.
He was diagnosed with a rare and life-threatening genetic disorder called CHARGE syndrome, which affects about one in 10,000 children.
Cooper is also deaf and legally blind, is unable to eat by mouth and has a tracheotomy.
But the most life-threatening of his medical conditions, according to Allison McElvain, was the diagnosis of athymis, meaning he was born without a thymus.
The thymus is a lymphoid organ that helps generate a strong immune system. Without it, Cooper is immunodeficient.
The typical life expectancy for children diagnosed with athymia, according to Allison McElvain, is about 2 years. Cooper is still awaiting a thymus transplant.
“He’s still just this happy, amazing little boy,” she said.
Getting a transplant, she said, is a difficult process since it has only been done about 100 times and has only been performed at Duke University Hospital.
Cooper and his family got the call in May that he was next on the list for a transplant. They arrived at the Ronald McDonald House in Durham, North Carolina, on May 18 to wait for doctors to find a donor.
A thymus transplant, Allison McElvain said, would come from a living baby undergoing open-heart surgery. Sometimes, she said, the thymus is too large and overlaps the heart, and in these cases, could be used for a transplant if all the requirements are met and the transplant is approved by the parents.
The family has been in Durham for a month with no luck yet in a viable donor.
The hospital screens its upcoming surgeries each week for a potential thymus donor.
Once a donor is found, it could take another two to three weeks before Cooper undergoes the transplant to ensure the donor thymus meets the requirements and is free of infection.
Allison McElvain said the procedure would completely change her son’s and her family’s lives.
“We, as a family, we’re in complete isolation. We leave the house once a month to go get his labs drawn. We don’t even really take him outside. We don’t know what’s out there, so he is completely isolated indoors, so this would just give him an opportunity to just increase quality of life,” she said.
A common cold, she said, is life-threatening to Cooper at this point.
“He was diagnosed with a common cold in 2018 and we almost lost him,” she said. “ That was just a common cold.”
Having the transplant procedure, she said, would also allow the family to focus on Cooper’s other medical conditions, such as receiving a cochlear transplant that would enable him to hear.
“Not being able to hear just breaks my heart. He qualifies for cochlear implants, but not right now because he can’t receive vaccinations. So just the thought of him someday being able to hear us speak to him, I think that’s probably what I’m looking forward to most,” she said. “Just the quality of his life will significantly improve.”
A “Super Cooper” GoFundMe account was set up to help offset the expense of caring for Cooper McElvain.
To donate, go to GoFundMe.com/f/Super-Coopers-Duke-Trip.
Christie Netherton, email@example.com, 270-691-7360