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My beloved mother died in September of 1999 from HD. She was 64
years old. It was a painful, disheartening death. I stayed with her and
listened for her last breath. When she died in her nursing home room, I
laid my body across hers and wailed loudly. The nurses took my mother's
room mate out of the room and closed the door. I then called my daughters
to tell them the painful and sad news that their "Mimi" had died. My 12
year old cried and asked, "Why Mom why?" My 18 year old couldn't talk
about it. How difficult it was to explain such a debilitating disease; to
know that my girls and I have a 50 percent chance of inheriting this
disease. We watched my mother change, her facial muscles, her walking,
not laughing anymore, no I love you's, and her body weighing 62 pounds.
My maternal grandmother died from HD. My mother's brother now has
the disease. I am an only child and I live with the fear of having HD
everyday. I am also fearful for my two daughters. Sometimes I will
forget something, have a twitch, etc. and think, "Oh my gosh, I have the
disease." I know I could get tested but I am fearful of the results.
Research is so crucial for this disease. We need all the imformation we
can get to find a cure for HD. If not for our generation, than for our
children's. It is a painful death. Research for HD could also answer
questions for other diseases that attack our precious brain. We
desperately need all the help, research, money, and support we can get.
Please don't hinder research, don't close the centre....
Sincerely,
Janet
Closing the Centre for HD
My beloved mother died in September of 1999 from HD. She was 64
years old. It was a painful, disheartening death. I stayed with her and
listened for her last breath. When she died in her nursing home room, I
laid my body across hers and wailed loudly. The nurses took my mother's
room mate out of the room and closed the door. I then called my daughters
to tell them the painful and sad news that their "Mimi" had died. My 12
year old cried and asked, "Why Mom why?" My 18 year old couldn't talk
about it. How difficult it was to explain such a debilitating disease; to
know that my girls and I have a 50 percent chance of inheriting this
disease. We watched my mother change, her facial muscles, her walking,
not laughing anymore, no I love you's, and her body weighing 62 pounds.
My maternal grandmother died from HD. My mother's brother now has
the disease. I am an only child and I live with the fear of having HD
everyday. I am also fearful for my two daughters. Sometimes I will
forget something, have a twitch, etc. and think, "Oh my gosh, I have the
disease." I know I could get tested but I am fearful of the results.
Research is so crucial for this disease. We need all the imformation we
can get to find a cure for HD. If not for our generation, than for our
children's. It is a painful death. Research for HD could also answer
questions for other diseases that attack our precious brain. We
desperately need all the help, research, money, and support we can get.
Please don't hinder research, don't close the centre....
Sincerely,
Janet
Competing interests: No competing interests