Personal Stories

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Personal Stories

“I was nervous… about seeing my own back... something that nobody sees... out in the open. I thought my back was going to be… what’s the word... grotesque? After I saw it, I thought, that’s not bad. It is my body and that’s it.”

By Louise Kinross

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Since I was a child I was encouraged to be as independent as possible. My family, teachers, doctors and therapists would all tell me to not let my spina bifida diagnosis prevent me from living a ‘normal’ life and for the most part, I had a relatively normal childhood. I was integrated into public school system in Brampton from the time I was in junior kindergarten and in my mind I was just like any other kid, but I happened to use a wheelchair.

My husband Frank’s journey began in the Spring of 2011. We had been retired by then for nearly 19 years. We try to stay active and enjoy walking, especially along the Seawalls in West Vancouver or North Vancouver. We also went to the local Recreation Center for Senior’s exercises on a weekly basis. So life was rolling along very well and we were both enjoying travel and good health.

Jeffrey and I were married at age 25.We were told that it would be difficult or impossible to have children, but we were blessed with our first child Austin just 9 months after our honeymoon. On Austin’s first birthday, we discovered that another was on the way. Another healthy pregnancy, or so we thought, right up until the day our daughter was born.

by Robin L. (Xanders ) Holloway

I was born in Izmir, Turkey in 1961. My parents were overseas while my father was stationed with the Air Force. As the story goes, my father was the first to note the swelling of my skull’s fontanels when I was only 3 weeks old. This was a problem. According to my parents, once I was diagnosed with hydrocephalus, this began a 3 year procession of surgeries and doctor appointments. They occurred in different countries and different states in the United States. Throughout the three years, my parents were cautious and wondered about my future, considering my limitations or my very survival.  I suffered from numerous secondary infections which did not make things easy to deal with for the military physicians or my family. My father did share with me that the physician who placed the first shunt was the doctor which designed the first shunting, for his own son in 1959.