About Author, Huntington's Disease

Unlocking the Marin Family Secret

When Lora, Marcia and Cindy, John’s sisters found out the family secret, their mother, Phyllis, had Huntington’s disease (HD), I remember being afraid but I didn’t know what I was afraid yet.

“Yet” is the key word. I’d never heard of HD or seen anyone with the disease, but by the look on the three women’s faces that day, I knew it couldn’t be good. The Marin Family Secret was about to be unlocked.

Phyllis Marin

This is the scene from my book, Watching Their Dance when the three Marin sisters told John and me what they had discovered.

(Chapter 1 page 14)

Cindy speaking: 

“The three of us visited Aunt Evelyn last week,” she began. 

“It’s been years since we’d seen her, and we decided it was time to reconnect.”  She looked at me.  “She’s our mother’s younger sister; she lives about an hour south of Sacramento, in Galt. 

We learned from her that we have a genetic disease in our family, called Huntington’s disease. 

Our mother, Phyllis, and three of her sibling had it.”  She paused a moment to let the words sink in. 

“We rarely saw our mother’s siblings after she died, so we were unaware that they had suffered from it.  It’s an inherited disease that causes the progressive breakdown of nerve cells in the brain.  It affects muscle coordination and leads to behavioral symptoms and, um, mental and physical decline.”

Needless to say, this conversation that took place on a cold November day, changed my life as well as the four Marin siblings lives.  For the next six months, I began a period introspection, self analysis of whether I could live with this HUGE UNCERTAINTY in my life and whether John and my love was strong enough to bear it.  

Sign up for my blog via email and I’ll send you the 1st Chapter of my book.  https://theresecrutchermarin.com/

We Can Never Lose HOPE…….

Author Therese Crutcher-Marin Book Signing in Auburn CA

Therese at the 2018 HDSA Annual Convention in LA.

Therese selling books at the Woody Guthrie Folk Festival in Okemah OK in July 2017

 

 

 

 

 

 

 

 

100% of the profit from Watching Their Dance is being donated to the nonprofit, Huntington’s Disease Society of America.  To date, I’ve gifted approximately $15,000.00.

 

 

 

 

 

Previous Post Next Post

You Might Also Like

No Comments

Leave a Reply

%d bloggers like this: