Welcome to Shota's Page



After an uneventful pregnancy, Shota was born on September 30, 1995 -- 5 days after the due date--weighing 7 pounds and 1 ounce. Shota had a rough start in life. He was taken away almost immediately to NICU to be monitored for his breathing difficulty, and as if that wasn't scary enough, he suffered seizures the next day. Doctors ran all sorts of tests to rule out the cause of his breathing problem and seizures and finally on the 6th day, an MRI scan on his brain showed 'significant' damage on both sides. I remember blankly staring into space as the doctor tried to warn and explain to us how Shota could spend the rest of his life severely handicapped both mentally and physically. Because of the MRI result, he was diagnosed with an in-utero stroke.


It wasn't until 6 months later that we found out about his chromosome deletion. It turned out Shota was missing a section of his 11th chromosome from 11q21 to q23.3. Our geneticist couldn't tell us anything except that there was nobody else with Shota's deletion. That's when I started searching on the internet for information and 7 months later finally found the 11q Research & Resource Group which truly has turned my life around.

 

Ever since Shota was diagnosed with an in-utero stroke on the 6th day, he received physical therapy (which ended when he turned 2) and infant stimulation. He's made remarkable progress, and continues to surprise his doctors.
He started walking just before he turned 2. Although his speech is non-existent, he knows about 40 signs that he uses to communicate with us, and he actually understands a lot of what is being said. He loved his school which he graduated in August, and knows all the gestures for the songs from the circle time!

Shota is a happy kid who loves to play with other children although he is usually very shy. (He likes older pretty girls like Rachel in the picture!) He is never jealous about his new sister Aiko; he pats her head and gives her toys when she cries. We've been told that jealousy is a developmental skill in which he is delayed, but maybe that's not such a bad thing to not develop.

 

I spent the first few weeks of his life, which was supposed to be the happiest time of my life, crying and asking WHY ME!? I thought I would never smile again in my life, and that Shota would never bring us joy. I wish I could go back in time, and tell myself how wrong I was! Shota has brought us so much joy like I could never have imagined. I really feel that he has taught us the true meaning of life. And happiness. There are bad days of course; he is delayed, and I worry a lot about his future. I will probably never stop worrying! But as Stephanie St-Pierre said on her homepage, I too believe quality of life does not come from what a child cannot do, but what they CAN do and what they bring to the people around them.
(Here is something that always helps me cheer up when I'm feeling down.)

Last updated on August 27, 1998

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This page created by Ryoko Goldston on 8/23/98

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