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Agony of Huntington's Disease

June 27, 2002

It seems hard to believe that a mother would kill two of her own children (" 'Motherly Love' Cited in Sons' Deaths," June 20). However, if you have gone through the terrible, agonizing years of Huntington's disease you would have an insight into what went on in Carol Carr's mind.

My wife has the disease. She cannot speak, she drools, she falls--it goes on and on. Her problems started in the mid-1980s. It is usually a very slow process. My wife may live for another 10 years, and she is only going to deteriorate more. My daughter got tested because she and her husband wanted to have children. She has the gene, but no symptoms. She is 28 years old. Now I get to contend with her situation.

I can just imagine Carr watching her two boys waste away. She must have felt hopeless. Although I do not condone her actions, I can understand. Now she is going to have to live the rest of her life knowing she killed her two boys. Life can be very cruel, but you cannot let it keep you down. With Huntington's disease you must play the genes you and your family were dealt.

Thurlow Partridge

Simi Valley

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We Huntington's disease caregivers always secretly hope for a celebrity victim to help us get publicity and research funding. But this is so heart-wrenching. My heart goes out to that brave woman. I know several families that are similarly afflicted and are hanging on by a thread. My husband is now in a nursing home after my having cared for him for several years at home.

Huntington's is a dreadful disease, totally hereditary, each child having a 50% chance of getting it. There is no treatment and no cure. We just watch its victims deteriorate mentally and physically for 10 to 20 years and finally die. We pray that stem-cell research will find a cure for our children and grandchildren before they start showing symptoms.

Janice Folick

Venice

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