BENEFITING: Huntington's Disease Society of America, Inc.
EVENT DATE: Nov 06, 2016
The night I met what would be my future husband Don we had met for coffee on an ice cold Colorado night. During the course of getting to know each other, he asked me if I had ever heard of Huntington's Disease. What a strange first date question, right? I knew Huntington was a beach in California, thats it. He then went on to tell me that his father was dying of this genetic disease, and that he too is at a 50% risk of having the gene that could cause him the same fate. I naively remarked on how heart disease runs in my family, my father didn't make it to age 55. Life is a risk in and of itself, right? I remember him looking at me kindly, and sipping our hot drinks together on a night so cold the bookstore windows were frosted over.
According to HDSA "causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure."
My Don is the oldest of 5 brothers. I was able to meet his father just before his passing, and he had beautiful kind blue eyes just like Don's but could not speak. Don was overwhelmed with those last days and because he lived in Colorado Springs, he couldn't get up to Denver often. When he did go, I would join him. Those lasts of his father's days were hard, especially on Don's family who lived in Denver. They had some very hard decisions to make, all the while knowing the risk hung over everyone. His mother stayed strong, kept her humor and made decisions with collective family input. She didn't sit in any grief, she just moved forward day after day. I watched as she made decisions based on non-verbal feedback from his Dad and the strong family who supported her 100% of the way.
Don and I grew closer in those days but he was often frozen by the fact there wasn't much he felt he could do. On one of his father's last days, we visited him in his hospital room. As his father slept, his movements were very rapid. I remarked on how young he still looked. Don said "That could be you one day, having to make those decisions that my mom is having to make ." Silence. This was NOT heart disease. However, once again - life is a risk. A great love is rare.
Don's father Don Sr. passed in March of 2006, roughly 3 months after we had met on that cold December night. In December of 2008 we married and I learned more about Huntington's Disease. My mind would start hearing the hard words. No cure? Fatal. That can't be right. I began to research furiously how I can at least slow progression. I baked, and cooked to exhaustion. I named hundreds of possibilites that could cause the gene. "Hey babe, how's about some blueberry pie for the 5th night in a row? Come on, how about some blueberries on that oatmeal? Oh, and here's some CoQ10 massive doses for an appetizer. Down the hatch!" He even put up with it for a long time, except less blueberries now. He's keeping the CoQ10 - which is good for me too!
No one wants to think about this disease. Huntington's Disease is insideous. One moment it will seduce you into not thinking about it all and the next, you are symptom watching. So what do you do? Some handle it very differently than others. Don has chosen to live his life. He has chosen not to be tested and live life to its fullest. I have now chosen to do the same with him. We will not live our life as if Huntington's possibilities own us. However, we respect that everyone handles this monster as best as they can. With no known cure, there is no "right" answers right now.
While he chooses to live his life, Don goes to Denver to help with research once a year. With one brother having the full gene positive diagnosis, he wants to help remove this disease from the planet. Any effort toward this cure is worth EVERY drop of effort.
Don is an incredible husband, father, and friend. He is a recently Retired Detective for the City of Colorado Springs. He has been cheering for me patiently in all 3 of my marathons to include Boston and drove to the top of Pikes Peak to wait for hours with cold drinks as I trugged to the top for 3 finishes.
New York City Marathon --- however, this one is for HIM. I'm running this one for Don! This one is FOR A CURE. This one is for the heroes like Don's father who donated his organs to Huntinton's research and fought bravely in frustration. This one is for the families like Don's who are dealing with the symtoms and making decisions in waiting rooms while praying for a cure.
Please know EVERY SINGLE DOLLAR COUNTS. I have been to meetings where I see people just trying to get through life and families trying to make the most of the hour to hour symptoms. All of this takes money. Although equally important, other causes do get more attention, education to the public and therefore more research dollars. This is why EVERY dollar matters. Thank you so much for caring and reading.
<3 Julie and Don