‘What he’s going through, it’s hard,’ North Carolina man says of his son’s rare genetic disorder

By Kristen Aguirre

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    ARDEN, North Carolina (WLOS) — A child from the mountains is fighting for his life. Derek McGinley, 7, is battling a rare genetic disorder and cancer.

“We didn’t know how we were going to do it,” his dad Aaron McGinley said. “We still don’t know how we’re going to figure it all out.”

But the McGinleys are doing their best to navigate their new normal.

“It was scary,” Aaron McGinley said. “We weren’t prepared for it at all or saw this coming.”

Derek was diagnosed with a rare genetic disorder, which caught during a routine eye exam.

“You know, an eye glass appointment is supposed to be boring,” Aaron McGinley said.

This appointment was anything but.

After the doctor noticed something was wrong, there were dozens of tests and doctor visits before Derek was diagnosed with a rare genetic disorder called SAMD9L. He’s one of only 25 people in the world have the disorder.

Luckily, a doctor in Pennsylvania was able to treat Derek.

“It felt like that was the only option,” Aaron McGinley said of sending his son to Pennsylvania.

That’s where Derek and his mom Aimee are. The cancer he as is a side effect from the disorder.

“You sometimes hear about people being called brave or whatever, but he really is,” Aaron McGinley said.

He is home in Western North Carolina working to pay down medical debt and take care of the couple’s other two children.

“It’s been difficult in that the whole family is affected,” McGinley said.

But Derek, even after undergoing a bone marrow transplant, keeps a brave face.

“We’re very proud of him for working through everything he’s been working through,” McGinley said.

His classmates at Glen Arden Elementary School are, too, throwing him a ninja party before he left for Pennsylvania.

“When you look at his room in his hospital, one of the things Glen Arden did was send ninja-themed decorations from his schoolmates,” McGinley said.

Derek pulls “ninja strength” from those decorations on hard days, his dad said.

“What he’s going through up there, it’s hard,” McGinley said.

But he’s not losing hope.

“I want him back,” he said. “I want my son back.”

Derek is expected to stay in Pennsylvania at least until June for observation of the transplant.

If you would like to support Derek’s fight, you may donate to his GoFundMe page.

You can also support Derek through a fundraiser at Turgua Brewing in Fairview from 5:30-7:30 p.m. Thursday, April 14.

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