“Your baby won’t live past the age of two.” My first birthday and the holidays were just around the corner when my parents heard those words. I was diagnosed with Spinal Muscular Atrophy (SMA) Type 1.
That was forty-three years ago. Donors like you helped make it possible for me to survive and thrive.
Not everyone is as fortunate. The staggering truth is that a muscular dystrophy diagnosis can bring a lot of loss – the loss of abilities like driving, walking, breathing, or moving your arms, aspects of independence, opportunities or even the devastating loss of a loved one.
I never had the ability to walk but I did lose the ability to sit up on my own, write and feed myself.
And as a child, I couldn’t participate in traditional winter activities. While the other kids were out tobogganing or building a snowman, I was always stuck on the sidelines.
My reality is that I use a power wheelchair and have 24-hour care for all physical activities of daily living. It can be frustrating not being able to do things without significant planning or having much privacy in my personal life.
One of my favourite holiday memories happened just a few years ago. I was watching TV with my caregiver. It was late and I had to work in the morning but they insisted we stay up. Moments later Heidi, now my wife, walked through the door. She had flown all the way from Germany to spend my birthday and the holidays with me!
That’s why I’m so thankful for donors, like you. You’ve made these beautiful life moments possible for me. This holiday season I hope you will consider helping more people living with muscular dystrophy.
The holidays are a magical time. But they can be very difficult for people struggling with a new diagnosis, experiencing progression of their disorder or dealing with loneliness. It’s also a very hard time for families and caregivers who are worried about their loved ones. You can help.
Your support today will offer relief to parents worried about being able to purchase necessary equipment for their children. You’ll improve mobility and independence for people living with neuromuscular disorders. And, you’ll help provide emotional support for people and families in need.
There are extraordinary financial expenses for people living with neuromuscular disorders. And, because neuromuscular disorders worsen over time, there is an urgent and ongoing need for equipment, programs and support.
For most people these costs are impossible without the support from donors, like you.
Each and every family and circumstance is unique. But we could all use a little holiday magic. Will you help make someone’s wish come true by giving a special gift this holiday season?
Because of the support provided by donors, I have a great life full of love, happiness and fulfillment. I’m married to a very special woman and we have a sweet puppy named Toffi. I also get the opportunity to live in my own home and contribute to my community through volunteerism. Most importantly, I’m able to maintain my health and independence.
During the holiday season I can’t help but reflect on all the generous support I’ve received. None of that would have been possible without donors – thank you.
Your holiday gift will ensure more Canadians can access essential programs, services and equipment that empower them to live life on their own terms. Please donate today and make a little magic for more families this holiday season.
P.S. I’ve dedicated years of my life giving back to the neuromuscular community, as a Muscular Dystrophy Canada employee, volunteer and donor, and I would not be where I am today without the support of generous donors like you. Please consider making a donation today to increase the quality of life for others living with neuromuscular disorders.