"Watching Their Dance is a heart-wrenching tale with HOPE as the key ingredient for survival." Jake Dowell, professional hockey player and Huntington's disease advocate. "Flip of a Coin" was a documentary produced by ESPN in 2013 about Jake and his journey through genetic testing.
"Tears, laughter, blessings, and hope....an amazing story that will touch, and help, I pray, everyone who reads it." Trey Gray, drummer for Reba McEntire and Brooks & Dunn and HD advocate.
"Therese Crutcher-Marin's story of a life at risk adds a new voice to Huntington's disease literature." The team at HOPES, Huntington's Outreach Project for Education, at Stanford University.
"Fatal and untreatable, Huntington's disease has been called the mother of all diseases, and those affected suffer from a devastating set of symptoms similar to those of ALS, Parkinson's, dememtia, and Alzheimers's combined. Watching Their Dance offers a compelling glimpse into the lives of an HD family, navigating a world of loss and fear with courage and clarity." Kate Miner, actress, musician and HD advocate.
Therese Crutcher is not a risk taker. Through meticulous planning, she eliminates as much uncertainty from her life as she can. Yet during her senior year of college, blithely planning to marry her beloved John Marin, she is suddenly thrown into turmoil when John's sisters announce they finally know what killed their mother, institutionalized when her four children were all under ten. Phyllis had Huntington's disease, an inherited neurological disease with horrible odds: John and his three older sisters have a fifty-percent chance of inheriting this terrible wasting disease, which slowly kills the brain cells that affect movement and cognition. There is still no treatment or cure.
John says, "You never know what will happen in life," but his at-risk status shakes Therese to the core. How can she live with such uncertainty? Eventually, Therese decides to marry the man she loves. All four Marins choose to ignore what they cannot change; and in the early years, John and his sisters--a big part of Therese's life-- remain healthy, fun-loving, and as close as ever. Therese takes another big gamble and has a child, and then another.
When she observes symptoms in Lora, the oldest sister, Therese fears that Huntington's has found her. And when Marcia, the gentle middle sister, is diagnosed with the disease, Therese--with two small children, a career, and a husband now in the prime age range to show symptoms--struggles against the demons that feed her fear.
After Lora dies, Therese feels unprepared to support her family should the unthinkable occur, so she earns a master's in healthcare administration and begins a new career. When Marcia's symptoms worsen, John moves her nearby, and Therese lovingly oversees her care. Several years later, Cindy, the youngest, most athletic sister, alsodevelops Huntington's, and Therese does the same, feeling that managing the care of these loved ones is a privilege and the greatest gift she can give them.
Thus unfolds a life filled with unpredictability, tough choices, and pain, and yet full of love, good times, and great joy. Therese comes to realize that the uncertainty she willingly took on has opened her heart to love more deeply; that acknowledging her world could change overnight has made her life richer. She has learned to overlook shortcomings and to compromise, to let go of anger when she can't control a situation, to find joy in the simple things. Life is just too precious to waste a moment on small stuff. And though John's sisters leave this world far too soon, the Marin siblings, she realizes, have taught her about embracing life, forgiveness, and unconditional love.