Quality of Life and Longevity

What is the Quality of Life Like for People with SB?

The Spina Bifida and Hydrocephalus Association of Northern Alberta has put together a series of videos to answer that very question.

For encouragement, check out the Inspirational Stories section of this website.

Something to Think About:

When people talk about quality of life, they are really asking, will my child be happy? Isn't that what a good life comes down to? Being happy? If that's true, disability has nothing whatsoever to do with quality of life - its attitude that matters. Does disability provide challenges? Of course. But there are plenty of miserable people in this world who do not have a disability. Is their quality of life better just because they don't have SB?

“When I was 5 years old, my mother always told me that happiness was the key to life. When I went to school, they asked me what I wanted to be when I grew up. I wrote down ‘happy’. They told me I didn’t understand the assignment, and I told them they didn’t understand life.” – John Lennon

For more information on quality of life issues, get connected with other SB families, check out photos of children with SB, look up famous people with SB, check out this great video at Life Rolls On.

This video by Aimee Mullins is worth 20 minutes of your time.

What is the Average Lifespan of Someone with SB?

The short answer is, "No one knows". Consider this: Anyone born with SB in 1985 was born into a world without personal computers, dvd's, the internet or cell phones. Medical technology is moving so fast that studies on longevity simply can't keep up. It sounds odd but one thing is for sure: in the history of the world there has never been a better time to be born with SB.

Parent's Note: Due to the level of my daughters SB, she is a paraplegic in a wheelchair. I am sometimes asked, "Will she ever walk?", and my answer is, "Not until medical technology catches up with her. But some of the smartest people on the planet are working on it."