Volleyball Fundraiser For Peyton Coming August 28
In August of 2001, the world changed for Patrick “Peyton” Tansey. The young boy, who had been born to a Belle Harbor firefighter and his wife in June of 2001, was diagnosed with Spinal Muscular Atrophy (SMA), a genetic disease in which the neurons that make the connections between brain and muscle were missing a vital protein. For the Tansey family, the diagnosis was like a death sentence. They were told that there is no treatment for the symptoms of SMA, no cure and little hope. Most victims of the muscular disease die before age 2.
Peyton, however, beat the odds, turning 10 years old in June, and his friends and family are fighting not only for a cure, but to bring awareness to the disease, which strikes 1 in every 6,000 births. On August 28, the nonprofit organization started by his mom, Jacqueline Tansey, called Pathways for Peyton, will hold a beach volleyball tournament, what Peyton himself calls a “funraiser” at Riis Park to both raise funds for research and to bring muchneeded light to the disease. It is clear that while SMA impacts motor skills and more, it does not impact intellectual growth.Tansey and the event coordinator, Cynthia Clifford, another Belle Harbor woman, came to The Wave to talk about the fundraiser.
“We want to build pathways for children like Peyton, children with disabilities,” his mother says. “If we provide access for normality to these kids now, we will allow them to be productive citizens when they grow up.” She points to the Beach Mat on the beachfront in Belle Harbor where the family lives. “The mat allows not only Peyton to access the water with his wheelchair, but it gives many elderly people the same accessibility,” she says. “It might not sound like much, but it’s very important to a lot of people.”
She pointed to one woman with joint problems that had not been to the ocean for years, but was able to get to the water with the beach mat.”
The fundraiser will be held on August 28 from 10 a.m. to 3 p.m. She urges even those who don’t want to play volleyball to come and share the fun with the family.
“This is a family-oriented event,” Clifford says. “Teams will be divided by levels of play. There will be competitive four-person teams and recreational six-person teams.” In addition, she says, there will be a children’s volleyball clinic and other fun things for kids.
Clifford urges teams from the NYPD and FDNY to come down and get competitive. A number of local organizations and businesses are sponsors of the day’s events, including the RIB’s Foundation, Boardwalk Bagels, Rockaway WISH and Friends of Fire-fighters. Entertainment will be provided by DJ Tommy Tunes and NY Kids Time.
Those who want to participate in the fundraiser can do so by registering at www.pathwaysforpeyton.org. (See ad pg. 14).