how I got handicapped

When I was born, Father thought I was perfectly normal & Mom felt I was just slow to walk, but when my grandparents saw me for the first time at age 7 months, they suspected something was wrong. I didn't move about like other babies. Grandad once told me he thought at the time that it was odd how well my legs flopped out froglike & how relunctant I was to sit up by myself.

Of course, it didn't help matters that a polio plague broke out in our area when I was 1&1/2. Like all the other kids in town, I too got polio. Only I never recovered. I seemed to, at first (I spent 1 entire day running around). A couple days later Mom saw me breathing with only my diaphram & saw my back curve into severe scoliosis within hours. It has since been speculated that the polio may have triggered the SMA to do its dirty deed in such a sudden way. 3-4 weeks later I was a quadriplegic.

Mom believed there was no reason for me to die if I got the proper assistance, so she moved us to her hometown in the US. Then, when most doctors said I was going to die by age 4 or 8, she did things her own way. Obviously, this was the right way because I am here.

In 2003 a genetic test 100% confirmed that I have SMA. The genetics counselor & I assumed that I have Type 2 since Type 1s are said to all die. Many months later I underwent an EEG conducted by a Dr. Yuen So, a leading researcher in SMA, who told me that everything pointed to me being a Type 1. He said he'd never heard of a Type 1 living as long me, let alone with as strong a phrenic nerve as mine.

I guess you can see why there are no words to properly express my gratitude & appreciation of Mom & to God for getting me this far. & it's no wonder that some deaf brothers gave me the sign-name "Stubborn" with the letter L. :)