John and his sisters, Lora, Marcia and Cindy don’t know a lot about her, their father never discussing her with them. So, I too, know very little but here’s what I do know.
She was admitted to Napa State Mental Hospital around 1950 on a part time basis. At that time she had two babies, Lora and Marcia, and she could not care for them. The doctors did not know what was wrong with her, and because she came home, she had two more children, Cindy and John. When Cindy was born, she was given to John’s Aunt Adeline and when John was born he was given to his Aunt Connie because Phyllis was unable to care for four children under the age of five.
Lora, Marcia & Cindy
Lora and Phyllis
She died in 1968 of strangulation as she got tangled up in the restraints the hospital had on her because her chorea was so bad. The underlying cause of her death was stated to be Huntington’s Chorea. History of Huntington’s Disease
This is such as sad story, but not unusual as Huntington’s disease family stories are always heartbreaking.
Many years ago I didn’t think I would be a mother. With the threat of Huntington’s Disease and John’s unknown gene status, deciding whether to have our own biological children or adopting was a huge question in both of our minds.
After about a year of discussing and checking out adoption, John said to me, “Therese I will leave it up to you. If you want to adopt or if you want us to have our own children, I’ll go with what you decide”. Having the decision power given to me, didn’t make it any easier.
I made my decision after I talked with my Grandmother McKibben. She shared her thoughts with these words that I had heard before. “You never know what going to happen in life”. Those were the words that had sent me back to John when I left the relationship because of Huntington’s disease.
I have been blessed in so many ways, and one is being a mother to our two terrific children, Vanessa and Keith. Everyday I give thanks that I made the decision to have our own kids. In 2016, John tested negative for HD, for which we are grateful, and because he doesn’t carry the mutated HD gene, our kids do not have to live a life AT-RISK.
In a previous blog, I wrote about Social Security Disability Insurance and the difficulty Huntington’s disease (HD) families experience when applying for benefits and how for a HD family, who might have two (2) or more family members struggling with the disease, disability dollars are essential for their financial survival. https://hdsa.org/find-help/healthcare-and-future-planning/disability-chat/
I know a family in town where multiple members are struggling with HD; mom and three (3) adult children who have Juvenile Huntington’s disease. The father/dad, a physician is still working, and is the caregiver for his loved ones at home. To have disability benefits for these four loved ones is, no doubt, helpful.
Another family challenged by HD is the O’Donnell Family. A film by Rae Maxwell and produced by HDSA, Her Mother’s Daughter, introduces the world to Kathi O’Donnell and shows the devastating impact that Huntington’s disease (HD) & juvenile Huntington’s disease (JHD) has had on the O’Donnell family. The film is a window into Kathi’s inspiring journey as a caregiver as we see the different stages of HD & Juvenile Huntington’s disease – a rare form of HD that progresses more rapidly than adult onset.
I’m a Huntington’s disease advocate having lost my three (3) sisters-in-law to the disease. As of January 1, 2020, a HDSA San Francisco Bay Area Affiliate will begin operating. Amy Fedele is the Co-Chair, I’m the Chair. The Stanford and UCSF Centers of Excellence Teams are involved and it is our hope to increase our presence in the SF Bay Area that has a population of 7.1 million.
In 1988, when two of my sisters-in-law, Lora and Marcia Marin were struggling with Huntington’s disease (HD), I became obsessed with increasing John’s Life insurance. He was employed by Placer County and as a manager he received a free $50,000.00 life insurance policy. What is HD
To protect my family and to lower my anxiety, I felt $50,000.00 was inadequate, because of John’s at risk status for HD, and set my sights on securing a private life insurance policy for John.
I remember the question that was on the applications that was the cause the denial: “If a parent is deceased, what was the cause of their death?” I wrote, “Huntington’s disease”.
We Can Never Lose HOPE……..
Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is available on Therese’s author website https://www.theresecrutchermarin.com and many book websites like Amazon
On this day, the beginning of the new year, I want to take a moment to be thankful, and to remind myself to continue having forgiveness & hope in my heart, and to keep kindness and mindfulness in my everyday activities.
2019 is here and what a great year 2018 was for my family as my father is healthy at 89 years old and my sisters and children are also healthy and happy. It has been a joyous year for the Huntington’s disease community; with the positive outcome of Ionis HTTRx drug and Genentech/Roche moving quickly to setup clinical trials around the world for the now HG6042 drug. Ionis HTTRx program and its future
My sister, Jen, and our dad
John & our children & their spouses
To learn about Genentech/Roche plan, click below on video.
We Can Never Lose HOPE…….
Therese is the author of Watching Their Dance, an inspirational love story while living in the shadow of Huntington’s disease. It can be purchased on her Author Website or Amazon
100% of the profit from the book is being donated to the nonprofit Huntington’s Disease Society of America (HDSA). December 2017, she donated $9,015.00 to HDSA which was the profit from 2017 book sales.
In the 1960’s, when my three sisters and I were growing up in Shawnee Mission, Kansas, my parents, Jim and Rita always made Christmas special for their children. Since we were a Catholic family, the focus was on the birth of Christ. Every year, my mother brought out the Advent Wreath that held three purple candles and one pink, designating the four weeks before Christmas. Before dinner, we said our prayer and then lit the appropriate candle(s). The themes of Advent are hope, peace, joy and love.
I have fond memories of Christmas Eve; dinner and presents at my Grandparents home, midnight Mass and a life size Nativity scene in the hall outside St. Pius Church entrance.
May your holiday be filled with hope, happiness, love and family memories, new and old.
I’ve had something on my Bucket List for a very long time, and this year I get to check it off. (A Bucket List is a list of things that one has not done before but wants to do before dying.)
My wish is to experience Christmas in another country without the commercialism and hype that we see in the United States. Quite frankly, I’m tired of blow-up snowmen displayed on lawns and the Christmas ads on TV before Halloween.
My family will be celebrating Christmas in the quaint little Italian town of Cortona, Italy. Keith, Fran, Scott and Vanessa will arrive on December 22nd along with Dawn, Jim and Casey Garrett.
Since John and I are retired, we left on November 29th and flew into Lisbon, Portugal and began a journey traveling through Spain, France and into Italy, arriving December 18 . We booked a 9- bedroom villa, Villa Luisella, for a week for all of us to enjoy together. Cortona is a town in the province of Arezzo, in Tuscany, Italy. It is the main cultural and artistic center of the Val di Chiana after Arezzo. Discover Tuscany-Cortona
A few days after Christmas, December 29th, John and I will take a train to the Zermatt, Switzerland where John will ski and we’ll celebrate the New Year.
Excerpt from the nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s:
In Chapter 26, page 206, John and I take Aunt Marcia, Keith and Vanessa on a Christmas adventure to cut down a Christmas tree and on the way home we stopped and had hot chocolate. It’s a positive memory my children have with their Aunt Marcia who was struggling with Huntington’s disease.
“Two weeks before Christmas, we treated Marcia and the kids to a surprise. We loaded everyone into the van and headed to McBurney Christmas Tree Farm, just outside Grass Valley. We slid a Mickey Mouse Christmas cassette into the tape player, and Keith and Vanessa sang The Twelve Days of Christmas all the way there. Just as we pulled into the parking lot, snow began falling, setting the stage for a perfect day. John turned around and said, ‘You guys get to pick out your very own tree this year, and then you can help me cut it down.’
Keith’s eyes grew big. ‘Do I really get to help chop it down, Dad?’
‘Yes, but you have to mind your father, Keith, and do exactly what he tells you.’ I bundled the kids up, and they were out of the car in a heartbeat.”
Watching Their Dance, an inspiration love story while living in the shadow of Huntington’s disease. 100% of the proceeds from the book is being donated to the nonprofit, Huntington’s Disease Society of America. It’s available on Therese’s author website https://www.theresecrutchermarin.com and many book websites like Amazon