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About Me
cindamays
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About Me
I had a daughter that passed away from this illness in 2003. I am wondering about the progress on treatment and might have alot of helpful information for families that are going through the same issues I dealth with for years. Especially with doctors.
I had a daughter that passed away from this illness in 2003. I am wondering about the progress on treatment and might have alot of helpful information for families that are going through the same issues I dealth with for years. Especially with doctors.
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Close Batten Disease
My daughter Bayli showed signs of problems at the age of 18 months. She was born a premature but proressed normally until about the age of a year and a half. She began to have seizures and began to lose the ability to sit or stand. She progressively got worse and with many hospitals and doctors involved she was finally sent to a far away hospital where we got a diagnosis. They told us she wouldn't live to be 11. She proved them wrong, she lived to be 16. We were blessed.
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