Group living with progeria to visit area

DAVENPORT – The Sunshine Foundation, an organization that grants wishes to sick children, will bring to Central Florida 14 young people, mostly children, who were born with progeria, an illness that causes them to age prematurely.

The organization’s annual Progeria Reunion will include a picnic and game day at the foundation’s Dream Village in Davenport next Saturday, a shopping day and a trip to SeaWorld for the young people and their families.

Progeria is a very rare disease that affects only about 30 people in the world. The visitors are from countries that include Morocco and Chile.

“Most of these children never see any child who looks like them,” said Gail Dillon, development associate with the Sunshine Foundation. The event, which runs Friday through June 24, gives them a chance to bond over their experiences.

The average life span of those born with progeria is 14 years, Dillon said. Those attending the event range in age from 3 to 25. The group dwindled this year, as one of the regular attendees is no longer able to travel.

On Saturday, the Harley Davidson Owners Group will take the group on motorcycle rides in Davenport, and Israel DuPont will bring two alligators for them to see. DuPont, a former animal trainer at Gatorland in Orlando, recently founded an educational project called Living With Alligators.

The group also can learn woodworking from Home Depot employees, swimming and playing the video game “Guitar Hero.”

“It’s a fun thing for the kids,” Dillon said.

In 1976, Bill Sample, a police officer in Philadelphia, founded the Sunshine Foundation as a wish-granting organization. It still sponsors trips for individual children and their families, but it has worked regularly with children with progeria since 1980, when a boy from South Africa requested a visit to Disney World to meet Pinocchio. He said he wanted to meet the character because he shared his “wooden” appearance.

Dillon said the boy, named Franzie, inspired Sample to begin the Progeria Reunion for other children with the illness.

“This is something that’s very dear to his heart,” she said.

Copyright 2009