Personal Stories

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Personal Stories

by Gilda Katz, MSW

I first had the idea of forming a peer support group for people with Hydrocephalus when a teenaged client with the disorder approached me about “wanting to meet people like me.”  I called the Spina Bifida and Hydrocephalus Organization (SB&H) office and they offered written information for my client, but, at the time, had no support group specifically for individuals with hydrocephalus.

Authors: Michael D. Cusimano, MD & Carolyn Sawicki

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By Hunímano Coelho

I rarely think about my spina bifida anymore.

I was born in Angola, Africa in 1981, to very young parents who were barely prepared to have their first baby. I was born at home premature by a month. Once at the hospital I was diagnosed with Spina Bifida and with congenital bilateral hip dysplasia (I also have severe scoliosis). I had my first surgery when I was a day old. After that I had surgery on both my feet and an unsuccessful attempt to have my hips fused. By the time I was eight years old my lower body was filled with the scars of surgery.

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Check out this example of sisterly love. When they were younger, Laura Booth, now 29, snatched an annoyingly noisy toy away from her little sister, Leslie Booth. Then the fight started. A few minutes later, the girls' mom, Joan Booth, heard Laura yelling, "Muuumm!"

Joan ran down to the rec room to find Laura strapped into her wheelchair, which was tipped backward. Laura's feet were sticking up in the air. Joan made sure Laura was okay then burst out laughing. Meanwhile, Leslie had disappeared upstairs.

Active in sports, Steve has more than homework on his mind.
What's the definition of a teenager? It's Steve. He is in Grade 11 where he goes to class and plays sports - lots of sports. After school, you'll probably find this sports fanatic at Variety Village participating in - you guessed it - more sports.

"I've been interested in sports all of my life," he says. Steve has spina bifida, and it affects him from his knees down. But his disability is not a big problem. "I can walk pretty well," he says.