Personal Stories

Personal Stories

Print Page

Send by email

Uplifting, enlightening and inspiring true stories from members like YOU.

Do you have a story?

We'd love to post your story right here on our website. Take a moment to read personal stories from our members.

Please contact provincial@sbhao.on.ca to find out how to submit your story.

I Was Actually Terrified of the Gym

Growing up with spina bifida, a birth defect that affects the spine, I was never physically active. I believed my disability excluded me from keeping fit. My peers would ridicule me in gym class because I could not keep up. Their mocking left me self-conscious.

KITCHENER — "Fight Till The End". The newly inked tattoo on Cody Richard’s arm is an indelible reminder of both his failing body and unflagging courage.
Unknown Object

The Kitchener teenager overcame many medical challenges, having been born with spina bifida and hydrocephalus. Dozens of surgeries were needed throughout his childhood for the spinal cord development problem and the buildup of fluid inside his skull with the hydrocephalus.

Despite all those issues, he was an active and happy child.

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.

An Overview of Adult Hydrocephalus

Authors: Michael D. Cusimano, MD & Carolyn Sawicki

I am me, but also you

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.