Hello! Bonjour! My name is Phoenix. I am seven years old, and am in grade two in French Immersion. I love to read, ride my bike, dance, sing, play dress up, and do arts and crafts. Oh – and I have a rare form of muscular dystrophy called Nemaline Rod Myopathy. Surprised?
When I was born I almost died. I couldn’t breathe properly, eat, or even cry. I couldn’t turn my head as it was very heavy, so mommy did that for me. I had some surgeries and was on a ventilator. Doctors told mommy that my chances of survival were very slim, and not to expect me to make it to my first birthday. If I beat the odds and survived, I would never be able to eat, walk, or talk, and most likely would have some sort of brain trauma due to oxygen issues.
I sure surprised them! I am walking, talking, swimming, and can even run a little bit now! I use a wheelchair for longer distances as I can get very tired, but don’t need it for shorter walks. I am also very smart! I read better than my big kid buddy who comes to my classroom to read to me! I also sing in choir and love it! Even better, I have been able to give back my ventilator, and just got my G-tube taken out – mommy cried because she was so proud of me. Mommy says I can do anything!
I asked mommy once why God gave me muscular dystrophy. Mommy said that only the strongest kids can be born differently-abled, because we are the ones who inspire the world. I thought that was funny because I have weak muscles, not strong ones! Now I understand that she meant strong in the heart, not the muscles. Sometimes it still makes me sad when I can’t keep up with my friends, but mommy says we are all born with different strengths, and different weaknesses. I am great at languages and reading instead, and wouldn’t the world be a boring place if we were all exactly the same? I think it would be.
I am proud of myself too! Mommy says that I am changing the way the world looks at kids with muscular dystrophy. I was once considered severely affected, and not likely to live. Now I am considered mildly to moderately affected, and am going forward full tilt! I just want people to know that just because my muscles aren’t built the way most people’s are, it doesn’t mean that I can’t do things that they can. I may just have to find a different way to do it. If mommy had given up on me walking I wouldn’t be able to walk today, so I have learned to never give up! One day I will be a dress designer, or a doctor, or maybe a ballerina. I think my most important job though will be to teach people about muscular dystrophy. I have already begun teaching the kids at my school, and have even taught some doctors about my Nemaline Rod Myopathy. How many seven year olds can say they teach doctors?!
Phoenix is the 2013 Winnipeg Walk for Muscular Dystrophy Ambassador.