4-year-old battles rare disease months after it killed his 2-year-old brother, family says

KNOXVILLE, Tenn. (WVLT/Gray News) - A family in Tennessee is dealing with a rare disease for a second time.

Only about one out of every 100,000 children are diagnosed with Hunter Syndrome, but the McMahans are facing it once again as their 4-year-old, Axile Moretz, battles the disease.

It was only in April of this year when Axile’s little brother, Gatlin, died from the same disease at just 2 years old.

Patricia McMahan, Axile’s grandmother, said the 4-year-old still doesn’t understand what happened to his brother.

He’ll say, ‘Where’s baby?’ He calls him baby, he doesn’t talk a lot so he’s still struggling,” McMahan said.

The family visits East Tennessee Children’s Hospital every week to have treatment done for Axile, while at the same time mourning the loss of Gatlin.

They have even traveled as far as North Carolina for specialized care on some occasions.

Hunter Syndrome affects the body’s ability to process sugar and impacts every organ in the body over time.

“Walking, getting to run and play like normal kids, he doesn’t get to do that,” McMahan said.

Although Axile has trouble speaking, McMahan said he is still a kid trying to make the most out of a tough situation.

Axile loves country music and often can be seen in a cowboy hat and using household items as pretend microphones, his family said.

“He’s full of joy, to go what he goes through. You’d never know that pain that child goes through,” McMahan said.

There is currently no cure for Hunter Syndrome. McMahan and her family fear the worst but are hoping for a breakthrough in research.

“A lot of cases kids don’t make it past 7. He’ll be 5 this year so, spending every moment every second with him is our goal,” McMahan said.

In an effort to maximize every moment they have with Axile, the family is planning to take him to Disney World in October.

They’re raising money to help make the trip possible.

If you’d like to donate you can do so by visiting the GoFundMe established for him.

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