Michael, Age 18
Glutaric Acidemia, Type 1
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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. |
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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.
Michael
Fair Lawn, New Jersey
gracefond@gmail.com
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.
Michael
Fair Lawn, New Jersey
gracefond@gmail.com
Update for Michael Glutaric Acidemia, Type 1, Age 18
written by his mom, Grace
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It has been 12 years since our last update, so I will start with a brief history and then bring you up to date on our 18 year old son. Our son Michael was diagnosed with Glutaric Acidemia Type 1 when he was 8 months old. As a baby, he had low muscle tone and we were sent to a neurologist who did blood work and a urine test. The high level of glutaric acid in his urine was the first sign. After seeing a genetic specialist at Mt. Sinai in New York and having a skin biopsy the diagnosis was confirmed and we started on the road to special formulas and diet. This meant being careful of childhood illnesses, hospitalizations for hydration when Michael was sick and constant monitoring of his protein intake. Michael had no crisis that we can pinpoint, other than a high fever during an ear infection prior to diagnosis, which may have caused the brain damage that he has, which affected his physical development. Michael is unable to walk or talk and has limited use of his hands. He uses a power wheelchair and a communication device to speak.
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Soon after diagnosis we began doing some research on line, we were fortunate enough to find Dr. Morton at the Clinic for Special Children in Strasburg, PA. Early on we visited them several times a year for Michael's metabolic care, while working with our pediatrician for all other typical medical care. Now that Michael is 18 years old, we visit once a year for a check-up, blood work and to update of his feeding plan.
In our last update, when Michael was six we spoke about how he struggled with eating and not gaining weight, this led us to having a feeding tube placed when he was seven years old. Michael continues to get the majority of his nutrition through the tube and eats some food by mouth. Overall, Michael is very healthy, very rarely gets sick and has not been hospitalized for illness since getting the feeding tube. He has had two surgeries: one to lengthen the tendons in his legs when he was eight years old: and in 2012, he had back surgery to place a rod in his back to straighten his spine.
We realized very early on while Michael was in a special needs preschool that he was extremely intelligent, and were encouraged to mainstream Michael in our local school. We did mainstream Michael, not without some struggles, but we are sure glad we did. Michael graduated last year and is now attending our local community college. In addition to school, Michael has many other interests and activities that he participates in to the best of his ability. I will not go any further, as I know he will be sharing that in the article he is writing for you.
Michael has a sister Julie (unaffected), who is 16 years old. They continue to be best friends, yet have their moments like any other brother and sister. We continue our journey raising a child, sorry, young man with GA1. It doesn't necessarily get easier, just different. The challenges are different, the successes are just as rewarding and it is funny how this all just becomes normal.
Larry & Grace
Fair Lawn, New Jersey
GRACEFOND@GMAIL.COM
From the Winter 2015 OAA Newsletter
In our last update, when Michael was six we spoke about how he struggled with eating and not gaining weight, this led us to having a feeding tube placed when he was seven years old. Michael continues to get the majority of his nutrition through the tube and eats some food by mouth. Overall, Michael is very healthy, very rarely gets sick and has not been hospitalized for illness since getting the feeding tube. He has had two surgeries: one to lengthen the tendons in his legs when he was eight years old: and in 2012, he had back surgery to place a rod in his back to straighten his spine.
We realized very early on while Michael was in a special needs preschool that he was extremely intelligent, and were encouraged to mainstream Michael in our local school. We did mainstream Michael, not without some struggles, but we are sure glad we did. Michael graduated last year and is now attending our local community college. In addition to school, Michael has many other interests and activities that he participates in to the best of his ability. I will not go any further, as I know he will be sharing that in the article he is writing for you.
Michael has a sister Julie (unaffected), who is 16 years old. They continue to be best friends, yet have their moments like any other brother and sister. We continue our journey raising a child, sorry, young man with GA1. It doesn't necessarily get easier, just different. The challenges are different, the successes are just as rewarding and it is funny how this all just becomes normal.
Larry & Grace
Fair Lawn, New Jersey
GRACEFOND@GMAIL.COM
From the Winter 2015 OAA Newsletter