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Trike brings thrilling rides for boy with rare disease

NEW PORT RICHEY

Being a normal kid doesn't always come easy for Gavin Lambert.

Gavin, 7, has Friedreich's Ataxia, a debilitating, degenerative neuromuscular disease that affects his coordination, balance and energy level. In time, it may have dire effects on his mobility, speech and hearing, and pose a risk for diabetes and cardiac disease.

He knows he's different, but Gavin doesn't have a name for what sets him apart from other kids his age.

For now, his parents, Dawn and Kevin, choose not to discuss particulars of the disease with him.

"We don't want him to see what could happen and think that's what's definitely going to happen," said Dawn Lambert.

So they concentrate on what he can do. He loves riding roller coasters, building stuff with Legos, and collecting Matchbox cars. He has a couple of thousand, at least. His bedroom décor features Star Wars, Transformers and other super heroes. He likes to play with his younger brother, Evan, who turns 2 soon.

At Longleaf Elementary, his teachers adapt everything to his abilities — including physical education. He plays goalie during hockey and, in first grade, joined the running club. During the Olympics, he couldn't get enough of swimmers Missy Franklin, Michael Phelps, Ryan Lochte and Allison Schmitt. Watching their stellar performances inspired Gavin to tackle the deep end of the family swimming pool — a first, his mom says.

Where Gavin really shines, though, is in the bucket seat of a recumbent tricycle, or trike for short. His parents bought his first trike online, a basic model good enough to hold Gavin's interest and take him on an 8-mile journey in his first "Ride Ataxia" near Orlando in November.

The cycling event features several rides of varying lengths held all over the country each year to raise money for FA research. It began in 2007 when Kyle Bryant, 30, rode his trike 2,500 miles, from San Diego to a National Ataxia Foundation annual meeting in Memphis. He raised $800,000.

The Lamberts got their first introduction to Bryant through an article in a magazine they picked up in the office of a pediatric neurologist who diagnosed Gavin through genetic testing. For several years, the couple knew something wasn't right but doctors couldn't pinpoint a medical cause. A seizure in November 2010 led to the genetic testing.

The doctor who delivered the news offered the couple no hope or any direction, but the magazine article did. It led them to the Friedreich's Ataxia Research Alliance and Bryant, who was diagnosed with the disease at age 17, but lives an active, independent life. The Lamberts came to rely heavily on FARA for information, guidance and support. They joined the board and help with fundraising for research, much of which is being done at the University of South Florida.

"We're not doctors or scientists and we're not millionaires," said Dawn Lambert. "But this is what we can do to help him."

One of the main fundraising events of the year is the FARA Energy Ball, which will be held Saturday at A La Carte Pavilion in Tampa. Through the ball and the cycling event, the family got to know Bryant personally; he and Gavin have been buddies ever since.

"I think he intuitively knows there's some kind of connection," said Bryant, who lives in Philadelphia but travels to Tampa four or five times a year. "He sees that we're all on the same team."

When Bryant saw Gavin on his trike at last year's ride, he introduced the boy to Mark Eglin, a partner in Catrike, a Winter Garden-based company that makes recumbent tricycles. They knew Gavin needed something better, so Eglin networked with colleagues at Utah Trikes to build a custom-fit trike for Gavin.

The $600 black and red KMX trike arrived last month and is already broken in.

"He looooooves it," said Dawn Lamber with a laugh. "He rides it every day and he's already flipped it by trying to see how fast it can go. He had some scrapes, but got right back on it and kept going."

When Gavin outgrows the trike, it will pass on to another child with FA, Bryant said. He knows the critical difference a trike can make in the life of someone living with the disease.

"My trike has completely changed my life," says Bryant, who spends most of his time in a wheelchair when he's not riding. "When I'm on it, I feel powerful. I'm in charge of what I can do. It's like my Superman suit."

Gavin already knows the feeling.

"I can go 500 miles an hour!" he happily exclaims.

. Fast facts

To learn more

For information about the Friedreich's Ataxia Research Alliance and the Energy Ball, visit www.curefa.org.

Trike brings thrilling rides for boy with rare disease 09/04/12 [Last modified: Tuesday, September 4, 2012 8:46pm]
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