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Adventure in the forecast for special needs boy

9:42 PM, Feb 21, 2013   |    comments
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ATLANTA -- Each year Bert's Big Adventure takes children with chronic and terminal illnesses and their families on an all expenses paid trip to Disney World. Thirteen children are going this year. They hit the road Thursday. Zach Tuttle is one of them with a special 11Alive connection.

"You know, being in the special needs life is being in an exclusive club,"  Zach's father Jason Tuttle said with an ironic smile.

It's a club he and his wife, Jennifer, joined when their son Zach was born with a rare disease: Eagle Barrett Syndrome, nicknamed prune belly.

"At 20 weeks into the pregnancy, we knew something was wrong," Jennifer said.

"He was born with little to no stomach muscles," Jason explained. "He has a smaller lung capacity. He is developmentally delayed."

Zach is recovering from a respiratory infection, released from the hospital just in time for Bert's Big Adventure.

RELATED | Inside Bert's Big Adventure

The family of four has never been on a vacation together. Jason said they've been put off by the stories of TSA harassment from other special needs families forced to travel with extra medical equipment and medicines.

Zach and his little sister, Samantha are non-verbal. Connecting with them is a journey in frustration.

"You definitely learn the definition of body language," Jason said. "You definitely learn what his mannerisms are. It's not always easy." Through that frustration, clarity. Calm. Inexplicable and a little strange.

Zach loves weather.

"It's the images going back and forth and the colors," Jason explained.

It's not just those maps and charts. It's that voice we know so well: Chesley McNeil. "Chesley McNeil is Zach's absolutely favorite weather person. Whatever is happening, he stops and watches."

They've been watching the weather, counting down. Adventure in the forecast.

Click on the video link to see how Chesley surprised Zach Thursday morning during Bert's Big Adventure send-off.

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