Young Benson man needs double-lung transplant

All Colin Wilson wants is to be able to take a deep breath.

The 23-year-old from Benson doesn’t dream of being an Olympian or even playing ball with friends. Instead, the young man who likes to draw just wants to be able to walk without stopping to catch his breath every few steps.

When Wilson was 6 months old, doctors diagnosed him with cystic fibrosis, a genetic disorder that affects mainly the lungs, but also the liver, pancreas, kidneys and intestines. There is no cure.

Now, reduced to 20-percent lung function, Wilson needs a lifesaving double-lung transplant. The family is thankful insurance will cover the bulk of the $500,000 procedure, but the family figures to have $40,000 in out-of-pocket expenses,

The Children’s Organ Transplant Association, COTA, is helping Wilson’s family raise the money. COTA is a national charity that helps organize and guide communities in fundraising for transplants.

LeAnne Jernigan Wilson Register, Wilson’s mom, said when her son was younger, he needed only the occasional doctor visit, maybe one or two a year. But as the degenerative disease worsened, Wilson had to take more and more medications and go to the doctor more often. This year, he’s been to the doctor 30 to 40 times, Register guessed.

“He can’t take good, deep breaths,” said his uncle, Thomas Jernigan. “He’s been home-schooled since he was little.”

“He used to have more stamina to endure things,” Register said, wringing her hands while sitting around a dining room table with other family at a relative’s house. “But not anymore. He catches a cold, and it’s just not a normal cold. It turns into a hospital stay.

“We don’t think about taking a deep breath. We do it all the time. We take it for granted. But he can’t.”

Wilson has trouble gaining or maintaining weight, even with tube feedings. He has to wear a vibrating vest three times per day to break up mucus in his lungs. He’s known he’d eventually need a transplant for some time, Register said.

Wilson sees two doctors, a social worker and a respiratory therapist through his treatment at UNC Hospitals. These days, he’s also taking transplant classes to help him prepare for the procedure.

But even if the family raises the needed money, and Wilson gets on a transplant list, the procedure isn’t guaranteed. If he’s too sick, or too well, he could get passed over for a transplant, Register said.

“There’s a window, and if you’re not in it, if you’re too well or too sick, you won’t get it,” she said.

Wilson is in that window now, and his family is hopeful, even as it knows that transplant recipients face long recoveries, the threat of immediate rejection and a lifetime taking medications to prevent that rejection.

Register works part-time and goes to college part-time, a schedule that allows her to care for Wilson and take him to his many appointments. In the weeks after his transplant, he’ll need round-the-clock care.

To raise the needed money, the family has donation boxes all across Johnston County, and businesses like Zaxby’s and Pizza Inn are helping hold fundraisers. Strangers have opened their wallets for Wilson.

“Everyone knows someone who’s been sick,” Register said. “They think, ‘What if it was my son?’ They’ll never know how much we appreciate it.”

Wilson described himself as shy.

“It’s been very interesting and quite a change to be the center of attention,” he said of the fundraising events he’s attended so far. “But it’s really great that people want to help me. I’m really thankful.”

When he was younger, Wilson said, he didn’t think he was missing out on much because of his illness. But as he’s gotten older, he sees people doing things he can’t.

“I’d like to get my driver’s license and maybe go to college,” Wilson said. “I’d like to go to an art school. And maybe I could run and not have to worry about it one day.”

Wilson attends a therapeutic art class in Carrboro every Tuesday, and his work will be in a show in Chapel Hill in September.

“His dad had a knack for drawing,” Jernigan said. “And his grandfather.”

But first, Wilson just wants to get better.

“I want to be able to take a big, deep breath,” he said. “That’s the first thing I’d do.”

For more information on Colin Wilson, his transplant and ways to help, go to facebook.com/colinscrusaders. Donation information is also online at cotaforcolinw.com. Make checks out to the Children’s Organ Transplant Association, put Colin Wilson on the memo line and mail them to 2501 West COTA Drive, Bloomington, Ind. 47403.

This story was originally published June 13, 2016 at 7:02 AM with the headline "Young Benson man needs double-lung transplant."