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Greenwood boy one of only 17 in US with illness

Posted: 10:50 PM, May 23, 2016
Updated: 2016-05-24 09:09:28Z

INDIANAPOLIS -- A 2-year-old Greenwood boy is one of only a handful of people in the country with a rare disorder that prevents him from walking or eating on his own.

In March, doctors diagnosed Adam Shuck with Helsmoortel-Van Der Aa Syndrome. He's one of only 17 known cases in the U.S.

The condition means his brain function and muscle tone are not where they should be.

At almost 2-and-a-half, Adam can't walk or sit up for long stretches, and he's fed through a tube in his stomach.

His parents don't know when progress will come.

"I wish somedays that we could trade bodies so he can know what it's like to eat and drink things and everything like a normal person," his mom, Tiffany Shuck, said.

The Shucks want to start with getting him to walk. They've set up a fundraising account to get Adam a piece of equipment similar to his walker, but it allows his parents to stand in its place. His muscles will grow while walking step-by-step with his parents.

Adam's physical therapist suggested it, but insurance won't cover it.

"Not necessarily a medical necessity, but for a better way of life for him," Shuck said.

Despite Adam's challenges, Shuck says he's a very happy boy – content to roll around and smile most of the day.

To learn more information about the fundraiser, click here .