Local boy with rare disease surprised with trip to Orlando

Henrico County, Va. (WRIC)

A local boy received the surprise of a lifetime with a trip to not one, but all of the Orlando, Florida theme parks.

“This part of my job is the most amazing part,” said Frank Squeo with Baking Memories 4 Kids, who made the trip from New York to Henrico County to surprise 13-year-old Austin Waters with the adventure.

Squeo founded the charity four years ago after his own battle with cancer.

“I just wish that we didn’t have to get a trip like this, that he wasn’t sick,” said Austin’s mother, Melody Thorpe. “But to get a trip like this is awesome. There are no words to describe how grateful we are and how awesome it’s going to be for my family.”

Austin was diagnosed with Friedreich’s Ataxia in 2011. The progressive disease is in the same category as muscular dystrophy.

“I just would like to bring awareness to what he has because it’s a rare disease,” Thorpe said. “We need a cure because there’s nothing, no medicines, nothing. We desperately need a cure.”

The national charity heard about Austin’s story after Squeo ran into Austin’s cousin on an airplane.

Baking Memories 4 Kids sells cookies to raise money for the trips. They’ve sold over 20,000 containers of cookies and helped 28 families whose children have life-threatening and terminal illnesses.

“We can give that family not only that week, but the time going up to that trip something to look forward to and forget about the chemo and the treatments,” said Squeo. “It’s a great honor to be here today to meet this family to give them this trip.”

And for Austin, there is one thing he is looking forward to most about the trip.

“Going to universal is what I really want to do,” he told 8News Reporter Tracey Smith.