Four-year-old Virginia boy struggles with rare disease

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CLIFTON FORGE, Va. (WDBJ) — A family from Clifton Forge is dealing with a rare disease that not even local doctors can treat.

Maria Broughman's 4-year-old son, AJ, was born with abnormalities.

"Our arm just goes completely straight, so the way his is, connects basically just the elbow immediately to the hand," Broughman said.

A rare disease called VACTERL Association left him with one kidney and without a radius bone in his arm. It's so rare that local doctors hadn't seen it before, leaving the family no choice but to travel to Greenville, South Carolina, to see doctors who recognize his disease.

"I've had adults come up to me and ask right after he was born, did he have a birth injury, was his arm broken during birth, and I have to explain to them, no, he doesn't actually have a bone to break," Broughman said.

Broughman says it's tough watching her son struggle with one arm. "You don't ever want your son to think there's something wrong with him, and he has started saying things you know like, my arm is broken, or my hand doesn't work," she said.

But in just a few short months, a surgery in Greenville should change all of that.

"I had no idea that they were able to do something like that, to build somebody a new thumb and rearrange your entire structure of your hand to give you mobility, I mean that's just amazing," Broughman said.

Until then, Broughman is saving up and looking forward to some positive changes.

"I'm so excited for AJ because he tells me his hand is not going to be broke anymore," she said.

For more information and ways to help, you can go to his GoFundMe page here.