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2 LI pals biking 3,300 miles to aid ill Wantagh baby

December 22, 2009 Leave a comment
newsday.com

September 17, 2009 by TIMOTHY ROBERTSON. Special to Newsday /

Lance Armstrong they’re not. But Ryan Burkett and Dennis Edison are undertaking a bike ride that – though not as fast or rugged as the 2,200- mile Tour de France – will keep them pedaling for 1,100 more miles.

Burkett, of Lynbrook, and Edison, of Long Beach, embarked this week on a 3,300- mile bicycle trek that will take them through 15 states – a journey to raise money for a Wantagh baby with a rare, incurable and often fatal disease.

The two friends are headed from Wantagh to Irvine, Calif., with the aim of helping 6-month-old Sophia Gaynor get into a clinical stem cell research trial for babies with the rare degenerative motor neuron disease type 1 spinal muscular atrophy at the University of California-Irvine. Sophia is unable to crawl or even hold her head up and spends her days lying on her back, connected to life-sustaining equipment.

Burkett said the two will ride about 100 miles a day, with a few days of rest built in, for two months, and return by air.

Burkett, who will ship off to South Carolina for boot camp with the Marines when he returns, planned on taking the ride even before he heard about the plight of Sophia. But he knew he wanted to make the trip for a good cause.

“I was looking for anything to make the ride more than for myself,” Burkett said. “As soon as I read Sophia’s story [in Newsday July 16], I knew I found a right reason.”

So two months ago the 24- year-old contacted Sophia’s parents, Vincent and Catherine Gaynor, who had launched an online fundraising effort, Sophia’s Cure, to get more information and ask how he could help raise money. But it was his first meeting with Sophia a day before her 6-month birthday that really moved him.

“I was blown away with how much life was in her and how energetic she was,” he said. “She was making noises and smiling the whole time. I was surprised.”

Burkett and Edison hope to raise $50,000 to assist efforts aimed at getting Sophia into the clinical trial at the University of California – a step toward the Gaynor family’s goal of $200,000. The program will accept nine babies beginning in January. As of early last week, the bikers’ Ride for Sophia’s Cure had raised a little more than $6,000. Contributions are being taken at sophiascure .com. Overall, the Gaynors have raised $100,000 so far.

Burkett’s partner on the trip, Edison, 25, said, “When Ryan was telling me, it just leaves a little hole in your heart. If I can help, why not?”

To prepare for the ride, the two trained in different ways. Edison doesn’t have a car – the transmission blew – so he rode his BMX-style bike to run errands and to his job as a lifeguard in Long Beach. Burkett, on the other hand, began training a few months back, starting at 20 miles a day and steadily climbing up to 60 miles a day.

“I’m just excited, honestly. I can’t wait to get started,” Burkett said before he left.

The trip aims to avoid mountainous terrain as much as possible as they cycle through Pennsylvania, Maryland and West Virginia. To avoid cold weather they’ll turn south, riding through Missouri, down to Texas and across the Southwest to Irvine.

“Mentally, it will be hard. [But] as far as riding, it won’t be an issue at all,” Edison said.

The two planned the journey with the help of a Web site, couchsurfing.com, where they found places to stay in 20 of the towns they’ll be passing through. The site connects travelers with hosts who allow guests to stay at their homes. On other nights the two will rough it, camping in a tent they’ll carry along.

For the ride, Burkett and Edison purchased two new Specialized road bikes. They’ll be riding without help – no cars trailing to make sure they get where they’re going safely – but Burkett says they’re well prepared: “I just bought a new cell phone with a new navigation system built in it, so I’m hoping that comes in handy.”

In all, Edison said, they’ve spent between $3,000 and $4,000 on the bikes, supplies and food. Edison has budgeted an additional $2,500 for the journey.

Beyond the adventure of the bike ride, Edison says his immediate goal is helping Sophia win her uphill race against the rare disease. “I’m trying to help raise money for this little girl while going on a crazy adventure,” he said.

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