Hydrocephalus Canada

Personal Stories

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Uplifting, enlightening and inspiring true stories.

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Personal Stories

By Steve Kean

Dear Mom,

In a previous issue of Current magazine we printed a story that included “An Open Letter to Parents” from a Mom, like you, who has a child with spina bifida. She is just beginning the journey of her child’s life. Her words were incredibly moving and inspired me to write this letter. Looking back at the more than four decades of my life, I wanted to write you to say a few things that I want you to hear.

Lorri-Anne Champagne was born with spina bifida in 1962. She, now 54, shares her journey.

By Dr. James Wright (formerly of The Hospital for Sick Children in Toronto)

Parents of children with spina bifida are overwhelmed at birth with multiple health concerns. Unfortunately those concerns never go away. The initial focus is usually on the closure of the spina bifida and the possible need for a shunt. However as those issues resolve, inevitably at some point parents want to understand how their child will function in their environment; will they walk, run, or play sports? Every child is different and we never want to extinguish hope but there are some general expectations based largely on the function of the nerves to the legs.

Jordan Sarraf is your typical 15-year-old boy.

He loves his Nintendo DS, eats like a champ and knows how to push his mothers buttons. You may even say he’s more active than the average teenage boy. He’s a competitive 10-pin bowler, swims weekly, enjoys cooking and is a visual artist whose work has been featured in a charitable calendar. He was even excited to get back to school after summer break. What does not make Jordan a typical teenager is the fact that he is a teenager at all.

At birth Jordan was given a four-month life expectancy.