COPING WITH HUMOR, FAITH

Victoria teen lives with rare disease found in only one of 20,000 to 50,000

He doesn't bother to tell the students he may die before he's 30.

Preston's disorder is so rare that he's thought to be the only Victorian to have it. Nationally, only one in 20,000 to 50,000 have it.

Lynch has Friedreich's ataxia, and it's a punishing disorder that results in an inability to coordinate voluntary muscle movements. It's caused by the degeneration of nerve tissue in his spinal cord and of nerves that extend to his arms and legs.

Three in four who have the genetic defect develop heart disease, most times in forms severe enough to be fatal.

The disorder progressively worsens. There's no cure or treatment for it. It's expected Lynch will be wheelchair-bound by the time he's 20.

"It's just stupid, because I'm tired of people asking me why I walk weird," the teen said, adding that he's only cried once about having this disorder, " ... about why it happened to me and not anyone else."

A MOTHER'S TAKE

Like any good mother might, Sherry Lynch, Preston's mother, struggles to cope with the idea her son may die before she does.

"It took us a good six months to come out of this big, black hole we were in," she said from her home, explaining Preston was diagnosed with the disorder more than a year ago. "You really have to turn it all over to God, and get really good at not looking too far into the future."

As a precaution, Preston visits a cardiologist every six months, as well as a pediatric neurologist.

"My mom used to break out crying, like right when we first found out," Preston said.

"It's been a real test of faith," the mother added, looking at her son. "We pray every day."

Lynch is a nurse at Citizens Medical Center, and she helps deliver newborn babies.

"It never, ever crossed my mind that we'd be faced with something like this," she said. "It's tough not knowing what to expect."

From the doctor

Dr. William Hilbert, a Victoria pediatrician, recognized that Preston's falling was due to more than a growth spurt, so he sent the boy to a pediatric neurologist.

"Preston is the only one I've seen in 20 some odd years (with the disorder)," he said. "I don't know of anyone else."

He said it's "hard to say" if the boy will live another 20 years. "With the natural history of the disease, that'd be unlikely. But with new medications and treatments, who's to know."

To parents who may worry their child has Friedreich's ataxia, he added, "A lot of kids are clumsy, and fall. But a child who is athletic and loses that ... that's someone who may have ataxia."

Is there hope?

Preston partook in a study in Maryland in November. An institute tested the boy, and then gave him pills that may or may not have been experimental medication. The family won't know if the pills were placebos, or medicine, for a few months.

Either way, Preston was given enough pills to last six months, once the study ended. He swallowed 16 a day.

Dalton, Preston's 15-year-old brother, said the initial shock of all this is dulling, and now the family can find ways to laugh again.

Jenna, 11, said, "At the beginning, it was real scary."

To demonstrate his condition - with his siblings giggling - Preston walked his home's hallway.

"I'm just trying not to fall," he explained, his arms outreached. "It just makes me feel real wobbly."

His feet were set wide apart, and his upper body leaned forward. If there weren't walls - like there aren't in the middle of a school courtyard - "then I would just fall."

It's not fair, perhaps, that he's punished this way. But he has twice been rewarded for having this disorder.

The first time happened when he fell chasing a high-hit baseball a few years ago. After he fell, the ball landed in his open baseball glove. "I'm the one who got my team first place," he said.

The second time happened when the Make-A-Wish Foundation granted him and his family a free trip to Hawaii in August.

"I've wanted to go there for a long time," the boy said.

The foundation attempts to enrich the lives of children with life-threatening conditions, and Preston fits that bill.

By why does he fit that bill? Why does he have this disorder?

"I think God has something special in store for me," Preston said. "Maybe president?"