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. And after nearly three years of this intensive-many-hours a day, 365 days a year therapy - Al can walk! And with additional specialized treatment is beginning to talk!
Why am I telling you all this you say between your tears? You can feel the pain and hope – the emotional roller coaster of reading those paragraphs – and are right now thanking the deity of your choice for you and your family members’ good health. Imagine what it’s been like for them. This is a story of human determination, human potential, the strength of the human spirit and the strength of a community. Asking for help is a hard thing, especially if you’re a strong independent prairie woman, like Ashley. Knowing that they needed to sustain the intensive therapy regime, and their own sanity, they started Alexander’s Foundation.
There are many ways you can help. Some take money, others time, and some a click of the mouse.
Until May 30th you can donate your Aeroplan miles to Alexander’s Fund and they will be used for the trips the family takes to Philadelphia and back for the ongoing medical treatment at the Institutes.
You can donate your time and sign yourself up to help out at one of the therapy sessions. You can help with food preparation for the very restrictive diet that the whole family keeps. (details for both on the website)
You can donate money. Alexander’s Fund is affiliated with the Charitable Foundation of the Family and can give charitable receipts.
You can ‘like’ the Face Book Alexander’s Fund ‘like page.’
And you can spread the word by sharing this post on Face Book and Twitter.
Why should you help out? Well, you shouldn’t – unless you want to. This isn’t a guilt trip. To me, this is about hope. Two parents who refused to accept that there was no hope for their son. Taking their hope and putting it into action through an exhausting therapy regime, and seeing the results of that effort. If you do help out, I can personally vouch that any help you give to Alexander and his family will be used to its full potential and greatly appreciated.
Whether you give or not in any capacity, I’d encourage you to check out the website to see pictures and videos of Al’s therapy in action and him walking. He’s an awesome little guy!
Next week back to regular blog programming with a post entitled: a hippy, a nun and a guy pretending not to buy five bags of chips in the 12 items or 'less' line up at Safeway - yes, it's going to be one of those!