This winter Jacob participated in a ski program through the Canadian Association for Disabled Skiers (CADS) for the first time. The program was fantastic, and Jacob had an incredible time. Yesterday was his last day for the season and I had the opportunity to ski with him – I even steered him down the hill a few times. I’m not sure if his favorite part was the chairlift ride or zooming down the hill, but something makes him laugh in the midst of both. It’s a wonderful sound to hear!
The following is a letter I sent to the executive director of CADS summarizing our experience:
This season was our first attempt at skiing for my 9 1/2 year old son. Jacob has a rare neurodegenerative disorder called Pelizaeus-Merzbacher Disease (PMD) and as a result, he has limited head control and is unable to sit unassisted. He doesn’t eat by his mouth and gets all his nutrition through a tube that was surgically implanted into his stomach when he was an infant. His vocal cords are paralyzed and he does not speak. Although we are unable to get an exact assessment, we know his vision is poor. But he understands almost everything around him and has a crazy sense of humor. Like most boys his age, he loves gross jokes and speed. I have tried to find a way for him to ski in the past but have always been told that he couldn’t participate. Then I heard about CADS through a classmate of Jacob’s and contacted Wayne. Our biggest hurdle to participation had nothing to do with Jacob’s ability or disability, it was about finding volunteers who had the skill (and strength) to handle a sit-ski. In mid-December Wayne contacted me with the good news that Jacob was accepted into the program.