Next StepsHave you ever made a choice or taken an unwise risk that caused you pain?
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- Joined: January 07, 2012
- Last Visit Date: 2012-01-07T21:07:35
When I turned nine months old my parents took me to the doctor for a check up. They weighed me and checked me out like they had done all the other times before. At the end of the doctors visit the doctor told my parents that my head was larger than it should be for my age and suggested I go in for a brain scan.
My parents took me to the doctor and had a CT scan done and came home. Before my parents got home the doctor had already called and told them they needed to come back, that the brain scan didn't look good at all and that they needed to talk to them immediately.
My parents came back to the doctors office where they were told that the front of my brain and other parts we severely damage or gone due to what they said was a Leukodystrophy, probably Alexander Disease. Alexanders Disease causes the insulation of the brain to come off, causing the brain to short out and causes all of the body to shut down. It is 100% terminal, with no treatment and no chance of survival. As the disease gets worse, I would start having seizures, start to trip when I walk, then I would not be able to walk or sit up. I would go blind, then deaf and finally be unable to eat Then possibly die and according to the doctors there was nothing they could do. They gave me twelve- twenty four months to live.
My parents were devastated and cried for days. They felt so helpless knowing there was nothing the doctors could do for me and that I was going to die this horrible death ; all they could do is watch me suffer and die. Refusing to give up, they went to get second opinions but the diagnosis was always the same. My seizures started at 12 months which made things worse. God help me over come this and I am now in my sophomore year of High School.