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Nonprofit group sends Gainesville girl on vacation

POSTED: March 4, 2013 12:46 a.m.

As Lacy Wilson stood in a dressing room at Walt Disney World, she helped her 6-year-old daughter Jacelyn Wilson into a blue-sequined Cinderella dress. She couldn’t help but break down.

“It’s something amazing to see happen to a child,” Lacy Wilson said. “It’s every little girl’s dream to be turned into a princess and there she was, being turned into a princess.”

When she was 4 months old, Jacelyn was diagnosed with neurofibromatosis type 1, a condition that requires constant monitoring.

She’s had four surgeries over the years to help remove pieces of the 15 tumors that are attached to her vertebra, throat and skull — most are inoperable. Every six months she has to be put to sleep to have an MRI so her doctors can make sure the tumors are not growing. The two often have to drive from their home in Gainesville to the hospital in Atlanta to see a specialist who can treat the condition.

“As a parent you never want to see your kid go through any kind of hurt,” Lacy Wilson said. “I have my moments. I have my breakdowns when she’s asleep or when she’s not there but she never sees that. She’s strong. She’s the strongest one out of any of us. She has to be since she’s the one who has to do it.”

Every year, deserving children with chronic or terminal illnesses, like Jacelyn, are given an all-expenses-paid, five-day trip to Walt Disney World by Bert’s Big Adventure, an Atlanta-based nonprofit. The children for the 11th annual trip were selected from across “The Bert Show” radio listening area including Indianapolis, Nashville and Atlanta.

The organization’s namesake and host of the radio show, Bert Weiss, said that even though the children come from different areas they all have one thing in common.

“The one (thing) they all have in common is they face difficult obstacles every day,” Weiss said. “It’s our dream to help them leave these challenges behind, make lifelong memories with their families and create togetherness and a network of support for the future.”

Jacelyn and her family were one of the families chosen to go on the trip. They were notified about the trip shortly before Christmas. The families left for their trip on Feb. 21 and returned on Feb. 25.

When Jacelyn first heard she was going to Disney World for the first time, she was overwhelmed.

“I was excited,” Jacelyn said, shouting the last word.

The day she, her mother and grandparents left for the trip, a long black limousine pulled into their driveway and drove them to Atlanta to catch their flight.

Jacelyn said she’d like to ride in a limousine again someday — or every day.

Lacy Wilson said every detail of the trip was beyond her wildest expectations.

“Any dream that you have of what they are going to do, they exceeded everything that you could imagine,” Lacy Wilson said.

Lacy Wilson said it’s hard to remember all the details of the action-packed trip: Parties were thrown for the children, gifts were given, dinners served “around the world” at Epcot and the children were awed by fireworks after sunset.

But the “burning truck” they saw during a stunt show stands out in Jacelyn’s mind.

“They flipped a truck, something caught on fire, ninjas were everywhere,” Lacy Wilson said laughing. “Every minute we were there was jam-packed full.”

While it would have been hard not to have a good time, some of the other children had moments where they needed a friend and Jacelyn was there to hold their hand.

During breakfast one morning, one of the other children started feeling a little overwhelmed by the people in costumes and masks. Jacelyn sat with her new friend to try to help him calm down, telling him everything was all right.

Weiss stood behind Jacelyn with a present in his hands for her, but she didn’t pay him any attention. She was too concerned for her friend.

Later that day Lacy Wilson said Weiss pulled her aside and told her what a special moment that was for him to witness.

“He said that was a defining moment for him,” Lacy Wilson said. “He said he saw her do that for every kid. It’s not just every adult there that worried for these kids and makes sure they’re OK. She’s just a sweet, sweet girl. They got to see that.”

Jacelyn said she’s glad to have made so many friends on the trip, She and her mother are looking forward to getting to see them again at reunion events.

“For my daughter to be able to be a part of this and go down to Disney and be able to make those friendships with everybody, that’s something you can never repay,” Lacy Wilson said. “I’m very grateful and humbled but I felt at home. Just to know that these kids might have different stuff going on with them but you know you’re not alone. There’s not a price tag you can put on that.”


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