My name is Alesandro. I am six years old and I have cerebral palsy and spastic diplegia. My Mommy and Daddy say I am their hero.
My Mommy’s water broke at 27 weeks and I lived in her without water for three more weeks! When I finally decided to come out, I lived in a box at the Neonatal Intensive Care Unit at Women’s College Hospital and then at Trillium Health Partners for almost three months. Mommy says I was like a beautiful present in a box just for her!
I had a brain hemorrhage and was considered at risk of cerebral palsy at birth. This was confirmed through an MRI at Sick Kids that showed a hole in my brain. My doctor says I have Level III cerebral palsy on the GMFCS (Gross Motor Function Classification System for Cerebral Palsy; Level I being the mildest and Level V being the worst). All I know is that I have to do things a little differently than other kids.
My baby brother named Niko is two and a half years old. He also lived in a box for two weeks and I was the first person to hold him at the hospital. My mommy and daddy said I have to be his best big brother and teach him how to crawl and to walk. My family is very proud of me for learning how to do so many new things through hard work with physiotherapy and conductive education.At the age of two, I still could not roll over. At the age of two and a half, I went from crawling to using a walker to using quad canes and starting single point canes. I did so well that I was the ring boy at my cousin’s wedding and I walked all by myself down the aisle using my canes. The doctors and physiotherapists said I would probably not be able to take steps with a cane until I was about eight years old. Boy, did I prove them wrong! Mommy and Daddy have helped me set good goals for myself, like standing on my own, and I am going to do it!
I’m learning how to do many things like teach my brother how to play soccer and hockey so I can be his coach. Conductive education and physiotherapy are helping me to be more independent in different areas such as learning how to get around in many different ways, and even do things that other people take for granted like looking after myself by tying my own shoes, holding myself upright, feeding myself, sitting down by myself, toileting and getting dressed by myself. I work really hard every day to learn these tasks.
Riding a bike is something I really wanted so we could all enjoy activities as a family, but I couldn’t ride a regular bike. The adapted bike that Ability Gives gave us is allowing me to take another step toward my independence. Riding the bike helps me maintain my muscle strength and range of motion. My doctor said that using this bike as part of a daily therapy program will have a profound effect on my life. I’m just having fun riding with my brother!
At first, it was difficult and a bit scary to sit on the bike. I couldn’t even push the pedal forward even though I tried with all my might. My Mommy and Daddy had to push me around the block and they kept encouraging me to try to push down on the pedal one foot at a time. Soon, I was able to go along with the motion of the bike once I had enough of a push start. Then, one day, I was waiting for my family to get going on our bike ride. I was strapped in, helmet on, waiting to go to the park. Everyone was taking so long! Mommy was getting water bottles, then my brother had to change his diaper, then Daddy had to get the sunscreen. Normally I’m very patient, like most other kids with physical disabilities—we always have to wait for everything; wait for someone to help us even to move our feet into position or to get a sip of water. Well, I was tired of waiting! I started rocking the pedals back and forth with my feet. At first, it was a very slight movement, but then the motion got bigger and bigger until I was able to take off on the bike by myself. I nearly gave my parents a heart attack! “Faster, faster,” my brother shouted as Mommy tried to chase after me. You see, I still hadn’t learnt how to control the bike or use the brakes. My Mommy, huffing and puffing, out of breath, finally managed to catch up to me and grabbed the handlebars to keep me from veering into the ditch at the side of the road. Needless to say, I had experienced my first taste of freedom, my first massive adrenalin rush. I was addicted! I have loved riding my bike ever since. I love zooming off to the park and when I’m done playing, I love racing everyone home. My Mommy still gets heart attacks; I guess boys will be boys, even if they have cerebral palsy. I can’t wait for summer so I can see what else I can accomplish with my new bike.
When I grow up, I want to be a doctor who helps kids with cerebral palsy just like me so I can help them be the best that they can be.
I love being with all my friends at school and all my teachers. I look forward to coming to school every day so I can show my new skills to my family when I go home at the end of the day. My story is just beginning and I will keep you all posted in the next chapter!
Your future CP doctor, Alesandro.
Alesandro wrote this letter with a little help from his mom, Shana, and Michelle McClure, Executive Director of Ability Online