Teen Thriving Despite Rare Disease, Amputations

By age 5, Rudy Garcia-Tolson had already undergone 15 surgeries to repair the effects of Pterygium Syndrome, a rare hereditary disease that can cause a cleft palate, and webbed hands, legs and feet.

Rudy was born with the most severe form of the disease. Doctors were able to repair his mouth and hands -- but his webbed, deformed legs could not be easily fixed.

Doctors then offered Rudy and his parents an impossible choice: life in a wheelchair or amputation of his legs so he could walk with artificial limbs.

"Cut them off," the 5-year-old boy told them. "I don't want to live like this. I want to go outside and play with my brother and everything."

Despite the disease, Rudy was an active and intelligent child, said his mother, Sandra Tolson.

"When he was little some people thought maybe something was wrong mentally," said Tolson. "You know, nothing mentally was wrong with him when he was born. It was just all superficial. Very bright kid, very smart kid, got along with everybody in preschool."

His doctors warned that even with artificial legs, he might be able to do nothing more than struggle on a walker. But after the amputation surgery, Rudy felt as if he were free.

A Gold Medal and an Ironman Quest

His parents were advised to take him to a therapeutic pool. "So the doctor wrote a prescription using a therapeutic pool which was like 100 degrees -- just for therapy," Tolson said.

Rudy started swimming in the super-heated water and made quick progress.

"I mean, after going a couple weeks, the therapist said, 'You know what, you should put him on a swim team. You should put him in a big pool,'" his mother said.

"We took him to the YMCA and the coach said, 'Yeah, put him on the team.' It was just like the water was just like natural for him," she said. "And he used to do his butterfly. You'd look at him and you'd think, maybe that's what he feels, like a butterfly, he's flying, if he's flying in that water because he has such a beautiful stroke."

When Rudy was 7 years old, he set a goal for himself: "I will compete at the 2004 Paralympic Games in swimming." When it finally came time, he not only competed in the 2004 Paralympic Games in swimming, but also won a gold medal and broke a world record in the 200-meter individual medley.

Since then Rudy has been unstoppable.

Rudy will be graduating from high school this year and has set his sights on the Ford Ironman World Championship in Hawaii. "Nightline" went to the San Diego Low Speed Wind Tunnel where Rudy's support team -- Team Braveheart -- were testing a new bicycle for Rudy to conquer the 112-mile ride at Ironman.

"His reach is universal," said Bob Babbitt, co-founder of the Challenged Athletes Foundation. "Because somebody is sitting on a couch at home -- somebody who's overweight, somebody who's got emphysema, somebody who's got something totally different than missing a leg -- sees Rudy on television and says: What's my excuse? I can do it. I can do whatever that person is doing without legs, I have no excuses."

Rudy's mother said she saw her son's obstacles as no different those of any other young person. "I want him to be treated equally," she said. "I always teach him to fight for his rights because he's the same. Some people say, no he's not -- he doesn't have legs. It doesn't matter; he's the same.

"The world is changing the way people see people with disabilities. Rudy doesn't like the word disability. Rudy doesn't like the word handicapped. He says 'I'm challenged.'"

Tolson said her son's outlook has begun affecting others, too.

"Rudy is changing the world," she said. "Rudy is really changing the way people see people who have a disability, who have a challenge in their life. Rudy has changed that a lot. He's got a big heart. He's got a very strong heart, too. He's got no fear. No fear for nothing. Rudy never gives up."

The young athlete himself agrees.

"I swim, I run, I bike, and I play football, I ride my skateboard," he said. "I'm just unstoppable."

Join the Discussion
blog comments powered by Disqus
 
You Might Also Like...