My name is Helen Ma. I’m a twelve year old who spends most of my time with my nose stuck in a book or with my eyes glued on to my mother’s Ipad (Angry Birds is always a very pressing matter). I live with my over protective mother, my under protective father, my grandparents who answer every phone call with “my English not good” and my two younger siblings who have a lot of attitude packed into a small package. I also live with this slightly annoying, thorn at my side, pain in the butt thing called Spinal Muscular Atrophy, or SMA for those of you who are too lazy to write the full name.
SMA is a neuromuscular disorder covered under the umbrella of muscular dystrophy. Muscular dystrophy affects many people around Canada. Sure, muscular dystrophy is hard to live with but some of the best moments in my life would have never happened if I didn’t have SMA. Zip lines, ferry rides and Disney World experiences were all thanks to SMA, and the people who help support those who have it.
Disney World is always a magical place, especially when you get to skip all the walking, hiking and long line waiting. Imagine arriving at a beautiful, castle-like hotel after four hours on a plane watching old movies, breathing in the fresh Orlando air and watching the palm trees sway and the flowers bloom. Now imagine that as a seven year old. I was so overwhelmed by the sheer sight of everything from the exotic looking animals and plants, to the warm weather in April. I was shocked. Then the next day we arrived at Disney World. I remember seeing the castle looming in the distance, the tallest towers hidden by the clouds. I felt determined to reach the castle, as determined as a seven year old could be. But unfortunately I never did reach the castle, probably because I stopped every five seconds to ooh and aah at famous characters, charming buildings and over priced souvenirs. The best memory of this trip was meeting Snow White’s evil stepmother. I know you’re all thinking “why would a seven year old enjoy meeting her?” well the truth is I didn’t, not at the time at least. The reason this is my best memory was because I just visited Snow White before I saw Snow White’s mother, I remember her asking me “Did you see Snow White? Tell me if you do.” My seven year old self vigorously shook her head, protecting her favourite princess from her doom. Looking back on that now I laugh at how scared I was. The point of me telling you this long, elaborate and detailed memory was to say that without SMA I would never have been granted a wish by Children’s Wish Foundation. I never would have gone at all. Even if I did I would have been stuck waiting in long lines, walking for miles and standing on my tippy toes to try and see over a crowd. These magical seven days are one of the best memories of my childhood. Just because I’m in a wheelchair, just because I can’t walk or run, jump or crawl doesn’t mean I shouldn’t seize every opportunity presented to me.
One opportunity that I just couldn’t pass up was zip lining at the annual Muscular Dystrophy Family Retreat. Before you decide that I’m crazy and stop reading let me tell you that it was amazing (and completely safe)! The speed, the wind and the view is just all so spectacular and breath taking. I remember getting strapped in with (not my parents they were too scared) a nurse. We went down together at incredibly fast speed, the wind tousling my hair and stinging my eyes, bringing on tears. Trees blurring into one another, fierce orange, bright red and smokey brown trucks. The lake sparkled in the distance. It was just as magical as Disney, only faster and a whole lot cheaper. As soon as it was over I was craving for more, unfortunately one heart attack was enough for parents. That didn’t stop me from going again two years later though.
The last thing I’m going to share with you today is about the ferry rides I take every other year, when the MD Family Retreat takes place in Camp He Ho Ha. The ferry rides are one of the things I look forward to most. Chatting with friends while the clean, misty lake water sprays my face. I enjoy this time because it’s both exhilarating and calming. The gentle movement of the small ship riding on the waves that are as crystal blue as the crisp autumn sky. The dock fading in the distance, leaving nothing but a faint smudge brown, a promise of land ahead.
These precious moments couldn’t have been possible without many of the generous people who have donated their time, effort and money to help kids and adults just like me. I’d like to thank Children’s Wish Foundation for granting me, and many other kids a wish, a dream come true. Without them I would never have been to Disney, never have seen Snow White and her mother and all those other characters that make it such a magical place. I’d also like to thank Muscular Dystrophy Canada who organizes so many activities and fundraisers every year. Especially the annual camp, in which I experienced the thrill of ziplining and the calm, gentle rock of the ferry boat. Last but not least I’d like to give a warm, virtual round of applause to our hard working firefighters. These funny and friendly firefighters help out at every camp, every Walk for Muscular Dystrophy, every year. They also camp on the roof of their station for a week to raise money for MD. Did I mention it’s in the dead of winter, with freeze your butt off cold temperatures? Thank you to everyone who’s donated money, one hundred dollars or just one single loonie. You’re making a difference!
Thank you everyone for making our lives just that much better!