This blog is about where writing meets life - which translates into me telling you how many sour ju jubes I eat and hours spent either in the sasquatch writing cave or outside reading in the sun. And I occasionally complain about cliches and the line ups at Safeway.
Today it's about something different. It's about the strength of the human spirit and a lot of hard work and dedication. It’s about a boy named Alexander and Alexander’s Fund.
It's about my friends, editor and photographer Ashley Bristowe and Governor General nominated author Chris Turner. They have two amazing children. The youngest, Alexander was born with Kleefstra Syndrome a rare chromosome defect. His parents were told he may never walk and may never talk. A devastating diagnosis for any parent.
While Alexander was properly diagnosed at 8 months, in the province of Alberta, Canada he would not be considered for cognitive and physical therapy until he was two and then there would be at least a year’s waiting list. Which meant he would be at least three years old – missing the key developmental years – before he would get any specialized therapy. That was unacceptable.
Ashley and Chris did not accept that there was nothing they could do for their son. Ashley started an in-home therapy regime based on books she read. They then discovered the Institutes for the Achievement of Human Potential in Philadelphia where they design cognitive and physical therapy for severely developmentally disabled and/or brain injured children. They have a proven track record of developing children to their full potential given the genetic cards they were dealt.
Travelling back and forth from Calgary to Philadelphia and paying for the specialized treatment (which is not covered by Alberta Health Care) is not only expensive, but running the program means Ashley has given up her career and half the family’s income. The program is extensive and all encompassing. She runs the therapy program 8-10 hours a day and spends the rest of the time documenting outcomes for the institutes’ rigorous program.
Many of the therapies take two to three people to do on Al, so Ashley is scheduling volunteers all day to help out in shifts. I’ve done a few shifts and it is overwhelming. Then there is the specialized diet and food preparation. You can get from this that it is an all encompassing feat that has taken many family members, friends and strangers to get them this far. Big sister Sloane get big kudos as well.
Alexander recently turned three years old.
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