Pueblo child to meet doctor who discovered her rare disorder

Frequent seizures, hospital visits and a special diet have become an unfortunate reality for three-year-old Makenzy Belcher.

Makenzy has a rare disorder known as GLUT1, which prevents her body from digesting carbohydrates. Only about 500 people in the world are known to have it.

Makenzy’s parents, Jason and Terri Belcher, are taking her to New York this month to visit the doctor that discovered the disorder.

“If he’s the one that found Glut 1, he might know more information just by looking at her,” Jason said.

Her father said Makenzy’s low-carb diet isn’t working. And she’s on more medications now than doctors first thought were needed.

“The diet is supposed to be working, and we’re supposed to be coming off the meds. And it’s just opposite,” Jason said.

He believes it’s critical to travel to New York to visit with Dr. Darryl De Vivo, who’s credited with discovering GLUT1. But Jason said right now, the expense is more than his family can handle.

“He is all cash. He does not take insurance. It is $800 to walk in the door,” Jason explained.

He hopes Dr. De Vivo can help explain why Makenzy’s seizures have become more frequent and longer. He’s worried about what could happen if Makenzy continues to have seizures often.

“We can find out that she might have a bad seizure and not wake up from it.”

The family is holding a fundraiser next Sunday, Oct. 12, to raise money for their trip. The event will be held at Steel City Eagles at 704 Elmhurst Place from 3-7 p.m.

Donations can be taken to any Wells Fargo bank for the Makenzy Belcher Benefit Fund. Jason said he’s also in need of auction items to donate for the fundraiser.

More information can be seen by visiting Mackenzy’s Facebook page “prayers for Makenzy JoLee Belcher.