Killybegs crew aims to form local branch for spina bifida
By Carolyn Farrar
A group of Killybegs bikers recently took part in a cross-country sponsored fun run, joining hundreds of others in a trip to benefit Spina Bifida Hydrocephalus Ireland.
A Killybegs mother who attended the run is also hoping to form an active Donegal branch of the national association.
The Killybegs crew, their family and friends, have together raised more than 20,000 euro this summer, with great support from their local communities, through sponsored head shaves, seafood barbeques, a Montessori "waddle toddle" and a fancy dress night.
Last weekend, they took part in the Annual Across Ireland 11th annual sponsored fun run, which drew about 700 bikers for the trip from Mansion House Dublin to Eyre Square in Galway, and back to Dublin.
This year the national association hopes to bring to Ireland a Giger MD machine, which improves the lives of children with the condition by helping them with their mobility. There are currently no such machines in Ireland.
Spina bifida is a disorder involving incomplete development of the brain, spinal cord and/or their protective coverings, which can result in physical and mobility difficulties, and some form of learning disability. Hydrocephalus is a related condition, in which there is too much cerebrospinal fluid on the brain. In the past it had been commonly called "water on the brain".
Ireland has the highest incidence of spina bifida in the world, and every year more than 80 babies are born here with the condition.
Caroline Lafferty of Killybegs, whose 2-year-old son has spina bifida, said that during a few coffee mornings in recent months she has met seven or eight other families with children under age two who have the condition.
"It's something that doesn't go away," she said. "It's a lifelong condition." There are further complications that can arise as the child ages, she said.
Caroline wants to start an active Donegal association branch to enable parents to meet with others who understand their situation, and to give children with spina bifida a network of young people who are also living with the condition. She pointed to an association branch in Kildare with about 70 members that runs a weekly sports night for children who use wheelchairs.
She said she wanted to get the group started now, so that her son "is not going to be 10 years old and feel he's the only kid he knows with spina bifida.
"It's hard to be a teenager, and to be a teenager with a disability is even more isolating," Caroline said.
A Donegal chapter, and a support group for parents, would provide families "with a network of people. It's not a unique thing, but because we're so remote from Dublin you feel you are remote. I believe that if you gather your troops together, you can do things yourself," Caroline said.
She said that when she and her husband learned of their son's condition two and a half years ago, "we were hardly able to say the words. We didn't know what it meant -- we had no idea." For a country with such a high incidence of spina bifida, she said, "It was a shame we didn't know." A local association would also work to promote and channel information about the condition to the public, she said.
Now Caroline and other organisers are looking for other families in the county who have a child with spina bifida or who have just received a diagnosis.
"Maybe they haven't had active communication with other people," Caroline said. "We want to bring them together and do something positive."
Caroline can be contacted at 074 9737778. More information on Spina Bifida Hydrocephalus Ireland is available at the web site, http://www.sbhi.ie.
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Saturday 04 February 2012
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