Continued from Nov. 13 blog. Dawn Doster and myself heightening HD Awareness in an interview last May during Huntington’s Disease Awareness Month.
“Despite getting pregnant and married at a very early age, Dawn Doster made an achievement-strewn life for herself and her daughter after marrying her second husband (who, as we learned yesterday, adopted Doster’s two-year-old daughter Yvette). She earned a bachelor’s degree and an MBA, was a teacher and then the business operations chief for a federal agency. Despite the fact that her now-grown daughter has tested positive for Huntington’s disease, and her grandson is at risk for it, she says, “I am blessed to have a wonderful family and a good life.”
For Therese Cructher-Marin — whose memoir, Watching Their Dance, about “marrying into” a family with Huntington’s disease, is available at amazon.com — she takes courage from her family. Having lost her mother-in-law and sisters-in-law to the disease, which her husband miraculously doesn’t have, she writes eloquently about their struggle: “I admired them from the day we met for their ability to be positive, loyal, fun-loving, forgiving and kind. What I learned from them could never be found in a book, a classroom, a religious setting, or a therapist’s office. Forty years ago” — when she met the family of the man she’d marry — “I took the biggest gamble of my life by keeping these people in mine, and it has made me the person I am today.” http://www.theresecrutchermarin.com
As we reported yesterday, she’s scheduled to become president of the Huntington’s Disease Society of America’s Northern California chapter next year, a post formerly held by her friend Doster.
“My dream,” Crutcher-Marin said in our lunch interview, “is to get people with neurodegenerative diseases together and form an alliance. Because symptoms may take a long time to show up, we really have no idea how many people may eventually develop Huntington’s (200,000 may be at risk). It’s often true of these other diseases as well. We need to share information and stories.”
If the stories are similar to those in her book, they’re emotional, horrifying yet somehow hopeful.”
Therese’s first book is a memoir/nonfiction, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is available on her author website http://www.theresecrutchermarin.com & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks file.