Teen Thriving Despite Rare Disease, Amputations

Feb. 7, 2006 — -- 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.

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."