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Personal Stories

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Growing up with a disability of any form forces one to adjust how they view the world, how they react to challenges, and how they overcome them. These unique circumstances can be a great source of adversity, but they can also foster unexpected growth and strength. I am a twenty-one year old who, at the age of three, was diagnosed with hydrocephalus, a condition where cerebrospinal fluid builds up and puts pressure on the brain. As a result, I required surgery to insert a shunt to drain and divert the fluid.

A mother reflects on what education has meant in the lives of children with spina bifida and/or hydrocephalus over the last 25 years. Her son Andrew, was born in 1966 and has hydrocephalus.

In 1971, Andrew was ready to enter nursery school in our community of Oakville, Ont. At that time the only children’s treatment centre with a nursery school program for children with disabilities was at Bloorview Kids Rehab, (formerly called the Ontario Crippled Children Centre) located in northern Toronto. This was too far to travel every day.

Reprinted from Current Magazine, Summer 1996

Our daughter Rachel-Iris was born December 26, 1993. We had prepared everything for her birth, or so we thought. After twenty hours of labour, our little girl was born, then our doctor told us that something was seriously wrong, as she pointed to her back. Rachel-Iris was immediately taken away and put in an incubator for close observation. We were later told that she was born with spina bifida, and that she would need surgery right away to close her back. We were also advised that there was a strong possibility that she may not walk. The next day Rachel-Iris was flown to The Hospital for Sick Children in Toronto. Before she left, we held her hand through the incubator, and told her we loved her and wanted her, and we watched sadly, as they took our little girl away.

A whispered promise leads a mother off the beaten path and towards a reliable source to treat her daughter’s condition.

About three years ago I began to feel uneasy with the conventional methods that were being offered by the medical community to treat my seven-year-old daughter Jessie’s spina-bifida related needs. I was especially concerned with traditional options for bowel and bladder management, such as synthetic stool softeners and the daily doses of antibiotics, whose side -effects I found unacceptable.