HDSA 2019 Convention
Most folks have opened their hearts to love whether it be love for parents, siblings, grandparents, children or a rich, deep love for another person; spouse/significant other.
When we love, we don’t think about the emotion of loss that will eventually occur when the person you love dies. I think it’s human nature not to spend time thinking about that event.
You cannot feel the emotion of love without the emotion of loss/grief. I ask, is it worth it to love? I believe it is. Article: If you love you will grieve
When I married John I was scared since he had an unknown gene status for Huntington’s disease (HD), a rare, fatal, genetic brain disorder that has all the symptoms of ALS, Alzheimers and Parkinson’s. The disease strikes young and when a parent has HD, each child has a 50/50 chance of inheriting the mutated huntingtin gene which causes the disease. what-is-hd/overview-of-huntingtons-disease/
I knew the possible consequences of my decision, but being young, I really didn’t know how this terrible disease stole everything from someone over a 10-20 year period of time. I soon learned, as my three (3) sisters-in-law succumbed to this horrific disease. Watching these three (3) lovely ladies, I carried a loss in my heart for 24 years. John didn’t want to be genetically tested so I realized I could also lose him this way.
Loving John wasn’t really a choice. I fell in love with this man and my heart couldn’t give him up so I loved deeply knowing my life could change in a blink of an eye.
To read about our love story while living in the shadow of Huntington’s disease. please see my author website: https://www.theresecrutchermarin.com
We Can Never Lose HOPE…….
I’m a Huntington’s disease advocate having lost my three (3) sisters-in-law to the disease. Beginning January 1, 2020, there will be a HDSA San Francisco Bay Area Affiliate. 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.
My author website is: https://www.theresecrutchermarin.com
You can read about my HD journey and the book I published, Watching Their Dance. 100% of the profits are being donated to the nonprofit, HDSA.