Mother advocates for pediatric organ donation as son awaits lung transplant

By Justin Berger

Click here for updates on this story

    ASHEVILLE, North Carolina (WLOS) — An Asheville mother is hoping to raise awareness about pediatric organ donation as her six-year-old waits for new lungs.

Wilson Perry has not slept at home in more than a year.

“This was a kid who never got sick,” Perry’s mother, Mindy Wilson, said.

Last July, Perry went to Mission Hospital with strep throat. The antibiotics he was prescribed were not helping him get better.

“Once we had spent about two and a half days there, his skin started peeling off as well as his oxygen, he was not able to breathe,” Wilson said.

Perry was admitted to the Patient Intensive Care Unit (PICU) at UNC Chapel Hill.

He was diagnosed with Stevens-Johnson Syndrome, which explained what was going on with his skin. That eventually healed, but Perry was still having trouble breathing.

Eventually, he was put on an ECMO machine, “which is essentially doing what his lungs can’t do for themselves; exchanging blood, oxygenating his unoxygenated blood and putting oxygenated blood back into his body,” Wilson said.

After more than a month in Chapel Hill, Perry was life-flighted to Cincinnati Children’s Hospital, where he has been ever since. He was moved to a bigger ECMO machine, which allowed for better oxygen flow, but still his heart struggled to get blood to his lungs.

“It’s almost like taking a hose and putting it against a brick wall, you’re just spraying the water and it’s not doing anything,” Wilson said.

By Thanksgiving, Wilson knew her son would need a lung transplant.

“There is a person in the room with him 24 hours a day, seven days a week monitoring that machine to make sure something doesn’t happen,” Wilson said. “So, if he does not get a lung transplant in time, he will die.”

Now, Perry is doing excellent, according to his mom. A newer ECMO machine has allowed him to begin walking around the hospital with the support of two other people pushing the machine.

“Ya, the support has been I’m speechless,” she said.

There have been all sorts of fundraisers, including at Soul Summit, an Asheville spa run by an old friend of Wilson’s whose son is the same age as Perry.

Last month, they donated 25% of a day’s sales to the family.

“Their story is incredible, and heartbreaking, and we wanted to help in any way we could,” Co-Owner Becky Haschke said.

Perry has been on the lung transplant list since March; his mom keeps taking it one day at a time.

“The most important thing for me and the family to realize now is to really enjoy the days that we do have with him because you don’t know how many more good days you’re going to get,” she said. “Every chance that we get with Wilson is another chance to just cherish and honor because we may not have tomorrow.”

For more information on how to donate, visit here.

Please note: This content carries a strict local market embargo. If you share the same market as the contributor of this article, you may not use it on any platform.