Molly's Kids: Indian Land boy living with rare genetic disorder - | WBTV Charlotte

Molly's Kids: Indian Land boy living with rare genetic disorder

(Credit: Family) (Credit: Family)
(Credit: Family) (Credit: Family)
(Credit: Family) (Credit: Family)
INDIAN LAND, SC (WBTV) -

Michael Miliote is four years old. He lives in Indian Land, SC with his family. Like lots of boys, he loves cars, trains, and lizards.

But unlike lots of boys, Michael suffers from a rare genetic disorder called phenylketonuria. Because it’s hard to spell and pronounce, people commonly refer to it as PKU. If left untreated, it can cause a person to suffer severe mental and physical disabilities.

PKU is rare. Having it means your body cannot process a certain protein found in most foods. You can survive if you treat it properly with a specific, detailed, low-protein diet and by drinking a special medical formula. But Michael’s mom says the balance is tough – if you drink too much of that formula you can cause brain damage.

All babies in the U.S. are required to go through a PKU screening when born. That’s how Michael’s parents, Mike and Amber, found out. They were notified Michael had the disease when he was a week old.

“We'd never heard of it,” Amber said. “I couldn't imagine such a perfect little baby, my little baby, having something so wrong.”

PKU is not a death sentence if managed properly, but does present major challenges. Amber says the can of that needed formula costs about $65 and Michael can go through one can ever two-and-a-half days.

“But we make do," Amber says. "We do what any parent would do - you figure it out. He's our boy. We'll care for him every way we know how."

She also says that for now, Michael swims, bikes, and loves to play with his brother.

"It’s an odd diagnosis and the diets are tough, but we love him and his brother Marshall more than anything," she said. "We know he loves us back. We will continue to get through this.”

Welcome to #MollysKids, Michael. Hope you and your family feel extra love this morning.

-Molly

*Editor’s note: This is about one of #MollysKids, children WBTV Anchor Molly Grantham follows closely on her Facebook page. It was first published there – which is why it’s written in a personal way.  For years Molly has followed hundreds of kids with uphill medical battles. Find this story (and updates on all #MollysKids) here.

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