Trisomy Awareness: Brandon’s MT18 Journey.com
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Trisomy refers to three copies of a chromosome. When three copies of any one of the chromosomes are present rather than the normal two, the outcome is 47 chromosomes in the cell, instead of the usual 46. The diagnosis of Trisomy 18, Edwards Syndrome, or Trisomy 13, Patau syndrome, is much more serious than the more commonly known Trisomy 21, Down Syndrome.
Developmental and physical delays are present in all three syndromes, but in Trisomies 13 and 18, the prognosis includes a much shorter life span. However, they are not universally lethal: 5-8% of these infants live past their first birthday, often without extraordinary measures. And, once a child’s age surpasses one year, there is a 60% chance of living beyond age 5.
I was born with Mosaic Trisomy 18. I was really small and was only 2 lbs. and 12 oz. Mom said that I was in the hospital for five weeks. I guess the feeding was torture because it would take me close to an hour just to drink 10 ml of milk. Eating sure isn’t a problem now. Now Mom has to bar the fridge.
When I was young I always did things differently. For example, when I was little I didn’t know how to crawl, so I just rolled around and used my feet to read and grab stuff. I learned how to walk and then I learned how to crawl. I had to go to a lot of doctor appointments and lots of therapy. I hated it! I would scream my head off. I still hate needles because of it. The last time I had a blood test I had to have 5 people hold me down.
When I was younger, my Mom asked our geneticist how she would have counselled her and she said that she would have told her to have an abortion. I was shocked to hear that. I’m sure glad that she didn’t.
I tried different sports — I wasn’t exactly great at any of them. I was bullied and it was tough: kids didn’t understand that I had special needs and that I couldn’t do the things that they could. It’s hard for me to understand when people talk too fast, or if there are too many instructions or distractions. Now I am home schooled and I have an awesome teacher and principal.
I like to learn a lot about history and I love reading. Another thing I love to do is act. Each year I write a play and then get together with other home school kids. Through my plays I have raised money for different organizations. I volunteer at a school once a week reading with the little guys.
I have been trying to help people understand that Trisomy 18 is not “incompatible with life” and have spoken at several events. My goal is to help save lives and get doctors to look at treating each child individually and not at labels.