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Michael Glutaric Acidemia, Type 1 – Age 18


Glutaric Acidemia, Type 1

My name is Michael and I have Glutaric Acidemia type 1. I am in a power wheelchair which I drive with switches near my head. I also have a communication device which I use to speak. I don’t let my disability stop me from doing the things I want to do.

There are many activities I do that may surprise you. Every winter, I go skiing with my family in Connecticut. They have an adaptive sleigh called a bi-ski which allows handicapped people to go down the mountain. I get strapped into the bi-ski and I have an instructor behind me who controls my speed. When I first started skiing, my instructor controlled my speed and turning. However, now that I have experience, I am able to control which way the ski goes by leaning left and right. Also, with many hours of practice, I have won 4 medals in the annual Stride Great Race at Jiminy Peak in Massachusetts.

Another thing I do is play chess. When I play, I tell somebody what piece I want to move and where I want it to go. I attend chess class every week and it has helped me win 3 chess tournaments. I also play flag football.  The flags are attached to the back of my chair and I have a buddy who catches the ball and places in my lap, then I can run the ball down the field.   When I am at home, I play video games. I have a giant adapted controller with big buttons and joysticks. There are multiple ways a handicapped person can use this controller. All of these activities are what I do for fun.

Now it’s time to talk about school. I started out at The Children’s Therapy Center when I was 3 years old.  At the pre-k program, I not only learned my ABC’s but I received my therapies there as well.  When it was time for kindergarten, my parents thought I would be better off mainstreamed because they knew I had the capacity to handle it. It was the best decision they made. It was challenging in the Fairlawn school district, but I managed to never get below a B in any class.

Now, I should tell you that I have a girlfriend. Yes, you read that right. I have a girlfriend. Her name is Sara and we have been dating for 3 years. She is also in a power chair and uses a communication device.  We met at Camp Chatterbox.  We visit with each other several times throughout the year and text just about every day.

That is everything I have experienced in my life so far. However, I have big plans for the future. I am trying to figure out what I want to do for a career, so currently I am taking general education courses at the community college.  Finally, sometime in the near future, I want to go skydiving.

Fair Lawn, New Jersey

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