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Abigail is a pretty typical five-year-old. She comes from a big, loving Southern family – five kids. She wrestles with her brothers and sister on the living room floor. She even competes on the same swim team. She hasn’t won a race yet, but she always finishes and the crowd always cheers a little louder for Abigail.
But Abigail isn’t like her brothers and sister. She has spina bifida. To Abigail, it means that she gets around a little slower with the help of leg braces and her walker. Her mother knows that her future is much more uncertain than that of her brothers and sister.
She knows that in time, the braces may be traded for a wheelchair, and the shunt that drains the fluid from her brain will need to be replaced. That will mean another operation. The first one came just 24 hours after she was born. A beautiful, squalling bundle with an opening in her spine. It was the first of many operations in her young life. How many more will come, no one knows. There’s a lot that no one knows about spina bifida.
We know it occurs during the first month of pregnancy when the spinal column fails to fully close. And we know there are a myriad of secondary conditions, in addition to partial paralysis. Like Abigail, many people with spina bifida have shunts surgically implanted in their skulls, are faced with urological and bowel issues (most need to catheterize at least five times a day to drain their bladders), struggle with learning problems even though their intelligence is normal, have allergies to natural rubber products and may be prone to depression.
What we don’t know is legion. What surgeries work best to control bladder function? When should children use braces, and which kind help and which cause more damage? Do the shunts needed by so many people with spina bifida cause further neurological and learning problems? What health conditions will confront them as they age? At 40? At 50? At 60?
On May 9 and 10, 2003, leaders in the research and care of people with spina bifida from some of the most prestigious medical centers in the country gathered in Washington , DC . Among the honored invitees was a young mother from a big, loving Southern family. She was there for the love of Abigail, to do what she could to ensure the quality of life that her daughter deserves.
Abigail is featured on the cover of a new brochure from Community Health Charities, as a symbol of our mission to help meet the health needs of beautiful little Abigail and millions of others like her. Abigail also made a surprise appearance at CHC’s 2004 Annual Meeting in Milwaukee and received a standing ovation.
The Spina Bifida Association of America (SBAA) – a national member agency of CHC – is fighting for Abigail’s future and the future of those who share her disability. Founded in 1973, SBAA is the only national voluntary health agency working exclusively for people with spina bifida and their families through research, advocacy, education and service.
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