DREAM TAKES FLIGHT
Ailing boy lands trip to Disney
By Alyssa LaRenzie
Hunter Pruett loves just about anything to do with “Star Wars.”
The 6-year-old has two toy lightsabers. He also likes to play the game on his Nintendo Wii, but the duels wear him out quickly.
Hunter suffers from a form of juvenile arthritis, which makes his joints flare up with too much activity, leaving him lethargic and making it difficult for him to overcome sickness.
He can’t walk for long periods, since his ankle joints are most affected by the disease.
But hopefully he’ll be able to stand long enough to fight Darth Vader on his trip to Disney World.
Hunter won the dream Disney vacation through Bert’s Big Adventure, which is sponsored by the Bert Show, an Atlanta morning radio program.
He’s most looking forward to participating in Jedi Training Academy at Hollywood Studios, where children learn how to battle with lightsabers before squaring off with Vader himself.
Hunter and 12 other metro Atlanta children ages 5 to 12 with chronic or terminal illnesses will travel Feb. 18 to Disney for a five-day vacation.
He’s been counting down the days until he sets out with his mother and father.
When Heather Pruett got the call from radio host Bert Weiss, saying her son had been selected, she asked if he was sure another child didn’t need it more.
“I can’t believe you’re picking us,” she recalled saying. “There’s kids so much worse than him. And he said, ‘I hear that from every parent.’”
Hunter’s parents had promised him that they would travel to Disney when he was able to walk on his own or when he turned 10.
Pruett said she doubted whether that would be a reality. With all the walking around and waiting in line, she imagined they would spend most of their time in the hotel.
With this trip, however, Hunter will have a wheelchair and no waits. In fact, Pruett said any concerns have been answered with, “It’s not a problem.”
The children get their own private charter flight, meetings with Disney characters and other surprises.
“The minute they get on the plane, everything that’s wrong with them just goes out the door,” Pruett said.
She hopes the trip will give Hunter confidence and perspective on his limitations.
“For him, I just think it’s going to show him that there are things he can do,” she said. “He’s really good about it 90 percent of the time. But then he gets upset about it, and he says ‘Why do I have to have arthritis? Why do I have to be special?’
“He’s not as bad as he may think in his mind, because what he sees around him is everyone’s normal. He doesn’t see that there are other kids that have issues and deal with the same things he deals with.”
Hunter learned to walk at 13 months, though he had difficulty with it. He was often in pain, but it took years of doctors’ visits before he was diagnosed in January 2009 with polyarticular juvenile idiopathic arthritis.
This type of children’s arthritis means that Hunter has more than five joints affected. His ankles are the worst, but he also suffers swelling in his hands and wrists.
Children’s arthritis is an autoimmune disease, where the body attacks the joints, causing Hunter to also have difficulty fighting off infections.
He also has chronic stomach problems, though doctors are unsure whether arthritis is the cause.
There is no cure for juvenile arthritis and no single treatment method that works for everyone.
Pruett said they haven’t yet found a medicine that works for Hunter so “he’s in pain every day.” He also gets a shot once a week that he doesn’t like.
It was hard to tell during a recent visit to a local park. Hunter ran around smiling and wielding his mom’s iPhone as a light saber.
Pruett said her son likes to show off around people. At home and school, though, he spends a lot of time lying on the ground.
When they do go out, the family usually totes Hunter in a wagon.
“When we can’t take the wagon, we normally don’t go,” Pruett said.
She recalled a weekend where they went to an Atlanta Falcons game, having to carry the 6-year-old most of the way on the long walk into the stadium.
At one point, she said, Hunter slumped down on a post and told his parents to watch the game and come back to get him.
Despite the hardships, his endearing and outgoing personality got him selected to talk to members of Congress about juvenile arthritis and the need for more research.
He’ll travel to Washington, D.C., a week after returning from Disney.
“We don’t even know what makes kids have arthritis,” Hunter said.
As a bright boy in the Horizons gifted program at Whitlow Elementary, he knows a lot about his situation and has no problem articulating it.
But his first-grade teacher, Cindy Dankewich, said Hunter’s a little more quiet about his arthritis at school.
Dankewich said he has many friends in his class, and the other children know he sometimes can’t do everything they can, such as running in P.E.
“He knows that there are things that are going to be more difficult for him,” she said, “so he needs to find a strategy to produce the same projects that [his classmates] do.”
Dankewich said Hunter excels in the classroom and often has an extra tidbit of information to contribute to the lessons.
“He’s just a very kind-hearted and bright child and we’re very blessed to have him in our classroom,” she said.