Greg Chamberlain is from Glenville, Bryanna Lyman is from Greenville. They were both born with spina bifida. At the fifth annual Walk-n-Roll for Spina Bifida fundraiser in Schenectady’s Central Park Saturday morning, they sat side by side, holding hands, chatting and laughing quietly as others gathered around for the announcement of raffle winners.
“It creates an incredible bond,” said Helen Eggenberger, co-founder of the Spina Bifida Association of Northeastern New York, which organized the event. “We started it to create an organization where parents could come together, kids could come together who have spina bifida, simply to come together.”
That was about 20 years ago. As Eggenberger looked around at the 250 or so people gathered Saturday for the walk and picnic, she said it was more than she could have expected.
“It’s really blossomed,” she said. “It warms my heart.”
The event welcomed those who were willing to walk a 3-kilometer course around the lake in the park, a total of five laps. Participants were also welcome to do fewer laps, or skip the walk altogether to hang out and enjoy a picnic under the pavilion.
Karen Wentworth, executive director of the association, said the event drew people from as far as three hours away.
“I am going to go out on a limb and say this is the largest gathering of people with spina bifida that’s ever happened in New York state,” she said.
The event is one of the three major fundraisers for the organization, which contributes to spina bifida research, as well as offering support services for those living with the disorder. A final tally of funds raised was not available Saturday.
Spina bifida is a birth defect that leaves the nerves in the spinal cord exposed and vulnerable. It occurs in the first month of pregnancy and affects about 3,000 children a year, according to information from the association. It can cause full or partial paralysis, diminished motor function control, learning difficulties, depression and social challenges.
“One of the things that we know is that every single person who has spina bifida is very unique,” said Wentworth. “Some people might need braces, they might use crutches, they might use a walker, they might use a wheelchair.”
Eggenberger’s son, Eric Crow, now 34, has been in a power wheelchair his entire life and has spent the past 13 years on life support. When he was first put on life support, doctors didn’t think he’d make it three years.
“He’s had many, many, many surgeries,” said Eggenberger. “Four brain surgeries. He’s beaten the odds I don’t know how many times anymore.”
He’s able to control a computer and stays in touch with people that way, she said. He also plays computer games, he’s the commissioner of the family’s fantasy baseball league, and he’s working on a baseball trivia book.
“He’s a wonderful, determined young man with lots of hurdles to get over,” said Eggenberger. “And we have a tremendously supportive family. His siblings are the light of his life. I think they help keep him involved in the outside world. To me, that’s one of the key things.”
Since spina bifida affects the entire family, the Spina Bifida Association of Northeastern New York is geared toward supporting family members at least as much as those with the disorder. Parents and siblings can get referrals to doctors and other services, share advice and information, and, as Eggenberger said, “simply come together.”
Mary Langelier, a 25-year-old with spina bifida, met a group of five other girls through the organization when she was younger, and together they found a dance instructor and formed a wheelchair dance group that lasted for about 10 years, said her mother, Margie.
“Obviously, all of us would like to prevent spina bifida,” said Margie Langelier, “but the organization is really more about helping people with spina bifida to live quality lives.”
Mary’s sister, Julie Yunker, said she’s grown close to the siblings of others in the organization with spina bifida throughout the years.
“We would go to a lot of different events together, and I’ve seen them grow up, and we would chat, because they’re going through similar life experiences as we are, having a sibling with special needs,” she said. “Now, even my kids get to be involved and kind of learn about supporting people with disabilities. For them, it’s nothing out of the ordinary at all.”