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Debbie began to change when she was around eight years old. She was struggling at school which was the first sign that something was wrong. Then her body started leaning towards one side and her walk changed. She was having problems dressing her self and accomplishing basic tasks. She didn’t talk much at all.
At around the age of ten Debbie was diagnosed with Juvenile Huntington’s disease. I don’t remember any discussion of this in our family. My brother and I were not told what was wrong with Debbie, and in fact, to this day I don’t know if Debbie ever knew she had JHD. I really don’t know if anyone ever discussed it with her.
Things were different in those days. It was over forty years ago (wow!) when Debbie was a ten year old and I was a nine year old. I gradually learned though that Debbie had inherited HD from our father who lived in another state at this time. I also learned that both my brother and I were at risk.
It was very sad to see Debbie change physically until she was no longer able to even feed herself. I remember coming home from school and taking care of her and feeding her. It seemed pretty normal to me and I don’t remember it feeling like a burden. I loved my sister and taking care of her was just part of my life.
At the age of fifteen Debbie was placed in a state home. It makes me very sad today to think about what her life was like in that facility. I don’t think any other resid
ent there had HD and I seriously doubt if any of the staff had any understanding of it. There just was not much known about it then. When we visited her at the home it was very upsetting to me. Debbie was in a wheelchair and her body was so rigid. I don’t know if anyone ever held her hand or tried to comfort her when we were not there. She looked so small and fragile.
When Debbie turned eighteen years old she was placed in a nursing home not far from where we lived. At least I could walk over to see her there. It was terribly upsetting though because I did not believe she was receiving good care. Who would have known about JHD in that nursing home? It was all much older residents and a few very mentally handicapped. No one knew how to care for a JHD patient.
I know Debbie was suffering from seizures and at the end of her life was not able to eat at all as she could no longer swallow. She lived about a year in the nursing home and she died alone there. No family members were present when she died. It makes me incredibly sad to think about that.
Today at least we have so much more knowledge about JHD and we are learning more and more. No child should ever have to live the way my sister did. We must do all that we can to ensure that our JH’Dears receive the best support and care possible.
The JHD Initiative gives us so much hope and encouragement. How wonderful it is that finally more attention is being focused on JHD. Please support this initiative and our precious JHD children. In my opinion they are the strongest and bravest people on earth. I love them all!
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