Two Clayton children to visit Walt Disney World with Bert’s Big Adventure
By Jeffery Whitfield
Only days separate 7-year-old Brandon Perkins from a journey he and 11 other children are preparing to take:
an all-expenses paid weekend trip to Walt Disney World in Florida at the end of February.
“I call it Brandon’s trip,” said Pam Perkins, Brandon’s mother. She, as well as her daughter and husband, will accompany Brandon as part of a trek established by Bert’s Big Adventure, a non-profit group that provides annual trips to Walt Disney World for children ages 5 to 12 that are stricken with chronic or terminal illnesses. Their families also are able to attend.
Bert Weiss, a disc jockey for WWWQ-FM who hosts “The Bert Show” on weekday mornings, established the organization with his wife Stacey in 2002. Children going on the trip come from all parts of metro Atlanta and those from Clayton County include Brandon, who lives in Morrow, and 5-year-old Denzel Dixon Murillo of Jonesboro.
Brandon is deaf and has Opitz Syndrome, a genetic disorder that affects the development of children. Common elements include poor growth, developmental delay, and a common pattern of malformations such as a cleft palate and lip, which Brandon had surgically repaired, his mother said. Brandon also has had 13 other surgeries, at Atlanta hospitals, to repair health ailments such as a hole in his heart. Despite coping with Opitz Syndrome, Brandon enjoys many of the same things that other children enjoy, Perkins said. “He does all the normal stuff boys do. He likes to run constantly and he loves school,” said Perkins. Brandon, a first-grader at Suder Elementary, communicates with his mother using sign language.
Murillo also attends Suder Elementary and his family is equally excited about going to Walt Disney World. “I’m counting down … but I don’t think he gets the concept yet,” said Roxanne Murillo, who is Denzel’s mother. Like Brandon, Denzel is deaf, though he has some ability to hear since a device was surgically implanted in his ear, Murillo said of her son.
Denzel has Beal’s Syndrome. Those with Beal’s Syndrome tend to be tall in stature with thin, gangly bodies, disproportionately long arms and legs, and narrow, elongated fingers. Many Beal’s patients have moderate to severe scoliosis, or curvature of the spine, as well as joint problems and chest deformities. Denzel has had several surgeries to help him cope with Beal’s Syndrome, including those to his spine, eyes and hands. He also had braces on his feet for over a year to help reposition his feet, which appeared turned inward when Denzel was born, his mother said. “Now he not only walks, he runs,” his mother said. Denzel communicates using sign language, though he can also talk, his mother said. And he likely will enjoy his visit to Walt Disney World because Denzel’s favorite character is Mickey Mouse, his mother said.
Perkins also said she expects Brandon to be excited once they arrive in Walt Disney World, especially since he will be able to see depictions of his favorite characters, Woody and Buzz Lightyear of the movie “Toy Story.” She also expects Brandon to enjoy flying on the Delta Air Lines flight to Orlando since he has always wanted to get on a plane, Perkins said. “That doesn’t mean he’s going to like it once he gets up there,” she said kiddingly.
All children on the trip will take the same Delta Air Lines flight. Past trips have featured children attending a fireworks display and parade at Walt Disney World. Many have also been guests on “The Bert Show.” This year the show will broadcast live on Feb. 27 from Walt Disney World’s Kingdom Lodge Resort in Orlando. Children were invited on the trip based on a nomination process. A Bert’s Big Adventure medical committee then bases its decisions on criteria such as medical conditions and financial need. This year’s children were selected from about 60 applicants.
(This article originally appeared in the Clayton News Daily on 2/14/2006)