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Hi, I'm Sharon from New Zealand. My daughter, Michelle, died of Late Infantile Batten Disease on 26th November 1996. She also had Down Syndrome and a major heart defect, successfully operated on when she was two years old. I have heard of only one other child with both Down syndrome AND Batten Disease.

She was 5 years, 8 months old when she died. The disease first showed itself when she was 3 years 5 months old, with epilepsy which proved to be uncontrolled. We didn't find out why until 21 months later. We have a 24 year old daughter, who is fine, and a 16 year old. I was worried for a time that younger daughter had the disease too, as they all had a one in four chance, without us knowing. Once she passed the usual age of onset, I knew that she was OK. That was a worrying time though, as she had absences, probably from an accidental bang on the head.

Last year we have had another challenge to deal with regarding our younger daughter. She was diagnosed with having Type 1 diabetes, or juvenile onset, so we are now getting used to another issue of special needs in our family. Having had Michelle in our lives, we know that we can get through this and survive. That still doesn't take away the initial shock reaction and the daily stress of dealing with the ups and downs that inherently come with managing Type 1 diabetes.

Michelle left me the gift of poetry as poems started coming to me out of the blue when she was ten days old and continue to do so. It seems to me that her life wasn't measured in years alone, as she touched and continues to touch so many people. Through Michelle, I found a strength inside me I didn't know was there and even though I have lost her, I will never lose what she brought me. I feel she is still around....and always will be.


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