My Children
Shirley Born 1951 to 2000
Shirley had 1 daughter Shelly
Butch who is free of the disease. Never been tested. has 2 Children and 1 Grandchild.
Roxie 1957 to 1991 No Children
Bruce 1958 to 1994 No Children
and now Shelly (Shirleys daughter) born in 1972 has just been admitted to a nursing home. No Children My darling Granddaughter Has passed on 2002, Shelly and I traveled to several HD conventions. We drove cross country to Denver for the convention then went on to California so she could see the Pacific Ocean. On the way back we stopped at Graceland. She was a great Elvis Fan. She had a life size portrait of him in her room at the nursing Home. I miss her terribly.
Tracie born to my second husband. She has been a God send to me. If not for her and my niece Judi I wouldn't have been able to take Roxie and Bruce out as much as we did. We took them to Pirate baseball games, Sea World, picnics, circuses. and shopping. They really enjoyed getting out.
Tracie has a daughter, Melissa Thank God they are not in line for HD.
This is an article written by my neice.
Special People by Jessica Laick
Special people that we encounter in life can be compared to flowers. When we are born we are instilled with values from our parents. Whether these seeds are good or bad, they grow inside of us and make us the persons we are. Some people blossom and share their warmth and radiance with others. By sharing these special qualities, they teach many people lessons about life that are priceless.
My cousin Bruce, who suffered from Huntington's disease, was one of these people. This disease, which is inherited, painfully and slowly destroys the nervous system. Although Bruce battled a long and hard time with the disease, he was always smiling and laughing, and would do anything to brighten a person,s day. When I looked at Bruce, I saw more than just a young man fighting for his life. Deep down inside, I saw a man who lived one day at a time and was not the least bit bitter to anyone he encountered, Now that I look back, I wish I would have been closer to Bruce, for he was a man whose heart had a good deal to offer to others.
Recently, another cousin of mine, Shelly, has been diagnosed with this disease also. She will never have the opportunity to experience some of the aspects of life that most of us take for granted.
Amazingly enough, Shelly has a better outlook on life than most healthy people do.
We lead such busy lives today that we take everything for granted. I often wonder why such young people become afflicted with these diseases. I think they were placed here to teach us one simple lesson...take time to enjoy your life, and cherish every moment of it.
This was written by a social worker at UPC in Pittsburgh In memory of Roxanne by Marcy Sorice.
"Come before Winter"
She catches my eye as I walk through the room. Sensing that there is more than "Hi", I go over to spend a few minutes. On my way over I reflect on the fact of how ofter I have seen this look coming from her eyes of late.
Her physical condition is deteriorating as the disease progresses. We both know it, but until recently she has handled the fact better than I.
I am reminded of a man long ago who sat in prison because of his convictions. He tried to be encouraged and to encourage himself, but there came a time when he wrote to his friend,"Come before Winter, I need my books and my cloak." But what he really needed was fellowship with his friend in his hours of increasing discouragement. He was fighting hopelessness in his soul and the winter was as much internal as it was outside of those prison walls.
I see this in her eyes; I hear it in her soul. "Come before Winter, my friend. Come before I am so lost in my hopelessness that I cannot see the beauty left to me, I know you cannot change what time will bring, but stay with me for a while, Help me to readjust my hopes and try to let go of some, but not all, of my dreams. Love me and help me to love myself as society around me sees me as less and less lovely and less and less useful- less and less of value......
"Come before Winter, my friend..."
Shirley had been hospitilized for nearly 2o years. I feel she was under heavy medication for too long. She also was on the feeding tube for 11 years. In the last few months of her life she had high fevers and was very ill. The doctor and I had decided to let her go if the feeding tube presented a problem or if she got a high fever again we would just administer comfort measures.
I believe Shirley intentionally pulled the tube and a few days later she looked at me as though to say "Let me go Mom... I have had enough" She finally seemed content.
So now the only one left in my family with HD is Shelly..My granddaughter. This disease shall end in my family .
