The Biggest Gamble

Therese often wondered what had become of her mother-in-law, Phyllis Iva. None of her In-laws could remember why their mother was in a state hospital and what led to her young death. The father refused to share the big family secret. Therese had no idea how this family secret would be akin to opening Pandora’s box.

“When I first heard of Huntington’s Disease, I didn’t know what it was, but I knew it was bad,” Therese recalls. The Marin siblings and Therese gathered to discuss the young mother’s death: complications from Huntington’s.

Huntington’s Disease (HD) is “a progressive degeneration of nerve cells in the brain that affects movement, cognitive functions, and emotions.” HD is often described as having the symptoms of Parkinson’s, Alzheimer’s, and ALS. This rare genetic disease currently has no cure and strikes young.

With hope and naivete, Therese and John started their own family. Together, they lived as fully as possible before HD’s unpredictability interrupted their plans.

HD first struck the Marin family with Lora, the oldest of the Marin children and Therese’s best friend. HD psychologically affected Lora; the disease manifested as deep depression and self-medication with alcohol. This maladaptive coping behavior led to a decline in her marriage, and at 41, she died of a cerebral hemorrhage. The Marin family’s loss left Therese shaken just as she was raising her two children. It wouldn’t be long before HD would strike again.

Marcia, the second oldest Marin sibling, was a stylish young professional woman. Things started taking a turn when Marcia began to wobble in her high heels at work. Her coworkers assumed that she was coming to work drunk. In Marcia’s case, HD manifested itself with involuntary movements, unsteady gait, and swallowing problems. Therese stepped up and started managing Marcia’s care to keep her independent on her HD journey. Marcia died at 49 of a heart event.

Cindy, the second youngest of the Marin family, was a free spirit and quintessential flower child. Cindy led an athletic and adventurous lifestyle full of kayaking and backpacking through countries worldwide. Through her active lifestyle, Cindy was able to slow down HD and didn’t start noticing symptoms until her early 40s. As HD progressed, she developed dystonia, difficulty swallowing, and cognitive decline. Cindy died at age 54 of cardiovascular complications.

John and Therese watched his older sisters lose their battles to HD. There was unspoken anxiety of not knowing if John would be next. A test for HD was not developed until 1993. Additionally, every child of a parent with HD has a 50/50 chance of inheriting the faulty gene. In 2016, John tested for the HD gene to see if this would affect his children’s lives. The family breathed a sigh of relief when John received a negative test result. Although their family’s struggle with HD was over, Therese had a hard time unpacking the 24 years of grief and loss. It wasn’t until she poured her sadness into her book, Watching Their Dance: Three Sisters, A Genetic Disease and Marrying into a Family at Risk for Huntington’s that the hole in her heart grew smaller.

Therese holds hope in her heart that she will see a cure in her lifetime. Watching her sisters-in-law lose their battle to HD, has made her continue to advocate for families affected. She started the San Francisco Bay Area Chapter of HDSA two years ago. She continues to fight by providing resources such as social worker and lawyer support for families affected by HD.

For now, Therese is comforted knowing there are many pharmaceutical, biotech, and therapeutic companies conducting clinical trials on drugs that will manage HD symptoms allowing HD patients to have a higher quality of life.

The nonprofit, Huntington’s Disease Society of America (HDSA), works to push research, provide free programs: social workers, counseling, multidisciplinary care at two HDSA Centers of Excellence in the Bay Area, support groups to improve the lives of everyone affected by Huntington’s disease and their families. HDSA will host a fundraiser and 5K run in San Francisco on October 5th, 2024. To donate to or find out more about HDSA, visit https://sanfrancisco.hdsa.org/

Therese Crutcher-Marin is President of HDSA San Francisco Bay Area Chapter, a Huntington’s disease advocate, author, and blogger. Visit https://theresecrutchermarin.c...