Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s. Chapter 17……………….
“On March 1, 1986, Big John drove his daughter to University of California San Francisco Medical Center. I’d been worrying about the Marin siblings for eight years, though it felt more like fifty, and many times I’d just wanted to flee. This was one of them. I dreamed of escaping with John and Keith into a world that had no illness, no genetic disease, where we could live happily ever after. But that was a fairy tale. The reality was–and I had no doubt–that Marcia had HD. My fear was almost consuming me, but, of course, it was nothing compared to what Marcia must have been feeling. UCSF Huntington’s Clinic
The neurologists at the medical center had a rating system, which they used clinically and in research, to evaluate a patient’s motor, cognitive, behavioral, and functional abilities on a scale from zero to four, four being the most severe dysfunction. Marcia would be evaluated in fifteen areas, among them gait, tandem walking, rigidity in arms, tongue protrusion, and ocular pursuit.
John called that evening to find out how it went, but she didn’t say much, only that the doctors would call with the results in three weeks. He tried to be upbeat, but you could tell it was a hard conversation. Even Big John was at a loss for words. Once again, I wished with all my heart that I could simply stop time, so that no more cells in Marcia and Lora’s brains would die and they wouldn’t have to experience any more pain or sorrow. And that way, HD could never find my love.”
We can never lose HOPE………..Therese
100% of the proceeds from Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, a memoir/nonfiction book, is being donated to Huntington’s disease organizations around the world.