Hello All,
We've had lots of questions about Isaac, MPS VI, and our Foundation, and I'll do my best to get back to everyone as soon as I can. In the meantime, I thought I'd re-upload our DVD that we made when Isaac was first diagnosed. We put it together as a way to help raise awareness of this disease and to help push our Ontario Government to help fund the expensive treatment, which costs up to $1,000,000 per year.
Not sure how much it helped with our efforts, but it does get used by families around the world that have to experience the painful news that their child might have MPS.
The DVD contains a 3 minute slide show of Isaac and some family photos, an interview with Dr. Joe Clarke, one of North America's leading MPS Specialists, and information about The Isaac Foundation and our quest for a cure. the video is about 14 minutes long so grab some popcorn! And thanks in advance for sparing some time to see it...
As soon as we completed the DVD, Isaac did have a spinal cord decompression surgery to help alleviate the pressure that was being put on his spinal cord. They took out his C-1 Vertebrae and a piece of his occipital bone and it has helped dramatically! We also (obviously) got treatment brought to Canada AND covered by our provincial health care system. But we need a cure and we still feel the video explains who we are.
Thanks again for stopping in.
Best,
A.
1 comment:
I hope you don't mind me posting on your blog. I come by way of John Mayer's blog (as I'm sure many others have). I wanted to let you know that I watched the DVD about Issac and MPS. Your video def. brought awareness about this disease - as I had never heard of it before. The video is amazing, as are your pictures and blogs. I hope you don't mind but I am going to post the video onto my blog. (If you would prefer I not, please let me know!) I will add Isacc and your family - as well as the doctors and those involved in the research for a cure - to our prayer list. God is amazing and always works wonders!
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