Sam

I was born on February 17, 2010 and I am super excited for my birthday! I remember when I was a baby, 15 months old, when I started having quick arm movements that I could not control. I used to get upset and frustrated to waste my dry Cheerios all over the floor. I did a lot of travelling to see doctors in Germany, Holland and England until finally in September 2017 my Mom and Dad got a letter to say that I had a CHD2 deletion of AGAA at 4233_4236 on one of my chromosomes. My body is different than other people but I still love travelling by train, subway, car and plane even though it makes me feel nervous. I worry about my seizures since they are getting worse as I get older, but my Mom and Dad tell me not to worry. They are helping to make me feel better using medicine. I have super teachers at my school that help me and care a lot about me. I try my best and I am a smart person, I just can’t get the words out sometimes. Sometimes I think of something or try to learn and my brain stops me with a small seizure. I can’t help it and most people understand.
 
I live in Ottawa, Canada now and I will try anything active. My body has grown well and I am larger than most people my age. My body moves a little slower than my friends so I sit and watch when I get tired. My aim this year is to learn to ice skate so I can play ice hockey and join a special team next year. I also love to go sliding down the snow hill with my Dad and neighbourhood friends.
 
My Mom says that I am a very nice person and although I find learning difficult, I teach people kindness without even knowing it. I’m not really sure what she is talking about, but I do know that CCC is working hard to find a way to stop my seizures. Last summer, our family also raised some money this summer for CCC by biking 100 km. You can watch our story here: 
 

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To help CCC, my family is planning some fun outdoor activities like ice skating and kicksledding with special t-shirts and raffles for CHD2 Awareness Day on February 2.