Huntington's Disease Awareness Part 4

It had been six weeks since blood tests had been ordered to test for genetic markers for Huntington's Disease.  Lacy, Kenny, and I sat in a neurologist's exam room.  We'd met with Dr. Alan Diamond to get the blood test order, and now we waited for him to tell us what the test revealed.

I'll never forget the image of Lacy leaning forward to listen to the doctor.  He loved going to the doctor, and was always interested in what his physicians had to say.  His face was so open and relaxed, he looked so young and innocent.

We said hello, and the computer keys made clicking sounds as Dr. Diamond's fingers opened Lacy's virtual file.  He didn't sugar coat the news.  "The test is positive for HD.  CAG of 49."

In that moment I looked at Lacy and saw him calmly listening to Dr. Diamond.  He did not know - and never understood - that what was said that day changed everything for him and for us.

Within five years, Lacy would lose the ability to walk, bathe and shave himself, to attend to his toileting needs, and his speech would become difficult to understand.  Within five years HD would claim our son as he lay sleeping in a nursing home.


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