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Hawkins Fight Against Huntington's Disease
Hello, my name is Darcy, I am 32 years old and before a year ago, I had no idea what Huntington's Disease was until it came crashing in on my family. This is my story...
On January 4th, 1993, my Grandfather died with Huntington's disease (HD) at the age of 79. He had four siblings in which two of them also had HD, passed down to them by their Mother. On August 23rd, 2016, we received the news the gene was passed down to my Father from my Grandfather. That was when HD became a part of my life forever.
Immediately after receiving the results, I got onto my computer and researched all that I could and quickly came to realize how horrible of a disease HD was. My Father is my best friend and the thought of watching him go through something so horrible broke my heart. I began to research Facebook groups, events and any other information on HD. That's when I found HDSA and the MN Chapter and felt I hit the jackpot. HDSA provided me with answers to the million questions racing through my head. They directed me to upcoming events in my area and more importantly made me feel like I was no longer lost.
Two months later was the Minnesota Celebration of Hope: Blue Tie Gala. My sister, dad's girlfriend and I walked in with our blue dresses on, scared, excited, happy, sad, fearful but yet fearless. I left feeling so blessed that we had enough courage in us to be in attendance. The moment we walked in we felt welcomed. We grabbed a cocktail and chose to sit at a table with a younger couple around my brother's age. Boy did we pick the right table! She too was struggling with her Mother's very recent diagnoses and was feeling lost just like we did. As the night went on we realized how much we had in common and by the end of the night, exchanged numbers and have been close every since. She wasn't the only one that touched my heart that night, there were many others.
Waiting in line to refresh my plate, a lady asked me if I was on the board. I looked at her and said "No, I am just here to learn. My dad was recently diagnosed and this was the first event I could be part of." She gave me a big hug and began to tell me about the Minnesota Chapter, how she's been attending their support groups for over ten years and that it'd be a great place for me to start. I said, "I'll see you there!" as I sat down to watch the awards ceremony. It was during this I became inspired.
There were so many inspiring people who were doing so much good in the HD community that I couldn't help but be inspired to give back too. The last award was given to a brother/sister duo who had lost their father to HD and I don't think here was a dry eye in the house when they were through with their speech. They told their story with such strength and compassion that in that moment I made the choice to stand up to HD, to fight for my Father, and to help raise awareness.
It was then time for the auction and I could not believe how much money was raised and the costs associated to support the HD community. I was so overwhelmed by the generosity of everyone in that room and it really showed me how much help is needed to provide care to patients and families in the HD community. The evening was coming to a close when we were joined by a couple who are very involved in the HD community and among other things, run the support groups. We were enjoying each other's company so much that night we decided to head to another spot together. I went home that night not feeling afraid or alone, but rather like I had gained so much knowledge, strength, and inspiration from a community that welcomed me with open arms.
The time came for me to attend my first support group. I was so nervous but quickly calmed by the familiar faces from the Celebration of Hope. That support group was just what I needed
. I was able to not only share my story with people who understood me, but I was also able to hear other's stories from all different stages of the disease. There was so much knowledge in the room and everyone genuinely cared about one another as if they were family, and family is exactly what they became to me as I went back month after month.
Now I was faced with the question, do I want to get tested at age 32 when I show no symptoms? As the younger generation, the decision to get tested early is one of the hardest decisions you'll ever have to make in your life. There are so many questions that come with it. What if I'm positive, then what? What if I'm negative, then which one of my siblings has it? What if I don't get tested, will I self-diagnose till I do? What if I'm positive, will I pass it down to my kids? What If I'm positive, will I find someone to be with or will I be alone? If I'm positive, when will I start seeing symptoms? I could go on...I made the decision to get tested for a few reasons:
- Because I knew if the results were I was gene positive, I could walk alongside my father, life his spirits, show him that it will all be ok, that he didn't have to let HD define him and that there was a beautiful life out there to be lived.
- Because knowledge is power. I am blessed I have the opportunity to prepare for my future. Past generations were not so fortunate.
- Because more than anything in this world I want to be a mother and there will be decisions I have to make with that.
There is no right or wrong decision when it comes to getting tested early, but it is very important to have support because it's a lot to take on alone. January 19th, 2017, my sister, mother and I walked into a room, leaving my dad in the waiting room because he could not bear t hear the results. We closed the door behind us. This was where I would learn I was indeed gene positive
and shared the same number as my father, 41. In that moment, I was shocked. I saw the pain in my mother and sisters' eyes and knew I had to be strong for them. I told them it was going to be okay, I was going to be okay. I asked they bring in my father because I would not be able to tell him. The minute my dad saw my mom, however, he knew. My heart broke for him more than anything because like most, my father felt guilty for passing HD on to me. In this moment I felt horrible because my dad wasn't ready to deal with his own diagnosis and now he had to deal with his daughter's. That day, I kept it together, for the most part, to help keep my family strong, but once alone at night, I lost it.
Here I was, 32 years old, going through a divorce, how was I supposed to start my life all over again? How was I going to be able to find someone I could trust enough to open up to about HD? Would I be a mother? Would I be healthy enough to watch my children grow up? I had never felt so alone, so afraid, so lost.
A few short months later I fell for my best friend who is my rock. He is selfless, loving and supportive and has been a wonderful advocate for HD. I have him to thank for giving me hope and keeping a smile on my face. I made a promise to God and to myself that I would love this life.
I would love myself and trust God wouldn't give me more than I could handle. I chose to have hope. Hope that one day, HDSA researchers would find a cure.
Researchers have already come so far in the past 20 years and that is something to be excited about.
If I could give advice to someone who recently tested positive, I would say keep the faith, never give up hope, family is everything, give back, share your story and know that knowledge is power. We must not be ashamed of our stories because it is our stories that inspire others. This is just the beginning of my story...
You have to choose every day over and over again to have hope and to not give up the fight. HDSA provides you with so many ways to get involved in your community and that is exactly what I did. I became a board member for the Minnesota Chapter, I attend all HD fundraising events and go to our educational days. The first fundraising event I attended I won an award for raising the most money! I couldn't help but be proud and more importantly, hopeful. Hopeful I can make a difference in these people's lives. I was also blessed to receive a scholarship from HDSA to attend this year's HD convention in Illinois. I am so excited to meet more people, hear more stories and gain more knowledge. I am so grateful for the people that make this possible for me! Just 9 months ago I learned what HDSA was and now they're giving me a scholarship to the annual convention. I am simply blessed and forever grateful.
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