Support growing for KY child with rare disease

In Union County, support is growing for a four-year-old boy with a rare disease known as T.A.R. Syndrome.

Drew Gatten has difficulty standing or walking because of his arm and leg abnormalities.

Drew attends pre-school at Morganfield Elementary and stays pretty active for a four-year-old.

"I love playing football with my friends, and I like to build squares with these," Drew said of his classroom toys.

The only difference is Drew was born with T.A.R. Syndrome. It's a mild blood disorder that can also affect bone growth.

His mother Janel says this disease affects about one in every 250,000 people, but Drew's case is different.

"With the severity of Drew's arms and his legs, I've had a specialist tell me that he's actually a one in a million," Janel said.

Janel says it's been tough but he still can swim, feed himself, and even get around in his own unique kind of way.

"I lovingly call it the booty scoot, so he just hops on his bum and he uses his legs to propulsion and he actually moves surprisingly fast," said Janel.

Drew is planning on having the first of two operations in May and to help with some of the expenses Union County Schools and several local businesses are pitching in with a Million Penny drive and have also made t-shirts.

"In our elementaries, our middle school, our high school, we're supporting and running the penny drives and wearing our t-shirts with pride because drew's one of us," said School Director of Public Relations Malinda Beauchamp.

"It's truly, truly opened my eyes about how great this area is," Janel said.

Drew and his family will soon travel to Florida for the surgeries, each taking roughly three months, and if all goes as planned, Drew will be walking tall by the end of the year.

"Thank you for my pennies," Drew said.

If you'd like to help drew and his family, here are fundraisers and links to a facebook support group:

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