Most of John’s relatives, did not know or understand the magnitude and the impact of Phyllis’s diagnosis of Huntington’s disease (HD) on the four Marin siblings lives.
Because Phyllis had HD, Lora, Marcia, Cindy and John each had a 50/50 chance of inheriting this horrific disease with no test, at the time, and no cure or therapy. HD is a rare, fatal, genetic brain disorder that has the symptoms of ALS, Parkinson’s and Alzheimers at the same time, strikes during prime working years, is a long progressive disease and has no cure. Sixteen percent (16%) of HD cases are children with Juvenile HD. http://www.hdsa.org
Their story is not unusual and I’ve heard similar stories from families in the HD community; one of secrecy, deception and misdiagnose. John’s father never told the siblings about their mother and they had to discover on their own why Phyllis was in Napa State Mental Hospital for 18 years.
We Can Never Lose HOPE………………..
100% of the nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is being donated to the nonprofit, Huntington’s Disease Society of America. To date, $14,100.00 has been gifted to HDSA.
Author website: http://www.theresecrutchermarin.com