We are Honored & Inspired to Feature Darcy Hawkins
An Advocate to build awareness of Huntington's Disease, while inspiring HOPE, Darcy has found her purpose in life.
My name is Darcy, I am 33 years old and before a year and a half ago, I had no idea what Huntington's Disease was until it came crashing in on my family. Here is my story.....
On August 23rd, 2016 I got the news that Huntington’s Disease (HD) was passed down to my Father from my Grandfather. Immediately after receiving the results, I researched all that I could and quickly came to realize how horrible of a disease Huntington’s Disease was. Most articles explained that it was like having ALS, Parkinson’s, and Alzheimer’s all simultaneously. My Father is my best friend and the thought of watching him go through something so horrible at such a young age, broke my heart. While searching the internet, I found Huntington's Disease Society of America. HDSA made me feel like I was no longer lost.
Because Huntington’s Disease is a genetic Disease, anyone carrying the faulty gene has a 50% chance of passing it down to their kids. So Now I was faced with the question, do I want to get tested or not. There are so many questions that come along 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 that will love me for me knowing the inevitable? If I'm positive, when will I start seeing symptoms? Will I be able to live with the fact that I have a fatal genetic disease brewing inside of me? I could go on.... I made the decision to get tested for a few reasons:
1) Because I knew that if the results were that I was gene positive, I could walk along side my father, lift his spirits, show him that it will all be ok, and that he didn't have to let HD define him, and that there was a beautiful life out there to be lived.
2) Because Knowledge is power. I am blessed that I have the opportunity to prepare for my future. Past generations were not as fortunate.
3) Because more than anything in this world I want to be a Mother and there will be decisions I will have to make with that.
January of 2017, just 5 months after my Dad was diagnosed, I tested positive for the faulty gene that will some day develop Huntington’s Disease. Sure I was scared and had a million questions in my head that I knew could never be answered like when, how, or why, but I felt a sense of peace, I could feel God’s love and purpose for me. I had just found my purpose in this life.
It wasn't until I attended a women’s conference called Flourish at River Valley Church that my life would change forever. During that time, I was worried about my future and I was taking a step back from everything I wanted in life. I had so many questions about what I "should" do to prepare for my future. In a sense I was planning my funeral. I was so fixed on what my life will end up being in the end that I stopped living for today. I no longer wanted to have children, I didn't want to be in a relationship, and I was no longer thinking about going back to school. I kept telling myself that I was doing it to protect other people. It wasn't until attending the Flourish conference that I truly understood the importance of flourishing and how big of an impact it had on my life moving forward.
I needed to learn how to go beyond being just OK with my life and start to really thrive, creating meaning, happiness and well-being for myself and others. Life will continuously change our journey, test our faith, and rob us of our strength. The truth is, we will wake up thinking life is hopeless sometimes. Our job is not only to fight these feelings but also to live heroically, to function well even when life tries to get us down. Once you get into the habit of disputing negative beliefs, your daily life will run much better, and you will feel much happier. It's really that simple.
I made a Promise to God and to myself, that I would love this life. That I would love myself and trust that God wouldn't give me more than I could handle. No one is promised a long healthy life, but we are all given a life to live and we choose how we want to live it. I chose to have hope. Researchers have already come so far in the past 20 years and that was something to be excited about. Life is a series of thousands of tiny miracles, we just have to notice them. If you would have told me a year ago that I would be serving on the Huntington’s Disease Society of America Minnesota board, that I would be a regional lead for the National Youth Alliance for HDSA, or be involved in a few clinical studies, and receive an awarded for Giving a Voice to HD, I’d say no way! But with the support of my family, friends, and the HD community, I am doing just that!
On August 23rd, 2016 I got the news that Huntington’s Disease (HD) was passed down to my Father from my Grandfather. Immediately after receiving the results, I researched all that I could and quickly came to realize how horrible of a disease Huntington’s Disease was. Most articles explained that it was like having ALS, Parkinson’s, and Alzheimer’s all simultaneously. My Father is my best friend and the thought of watching him go through something so horrible at such a young age, broke my heart. While searching the internet, I found Huntington's Disease Society of America. HDSA made me feel like I was no longer lost.
Because Huntington’s Disease is a genetic Disease, anyone carrying the faulty gene has a 50% chance of passing it down to their kids. So Now I was faced with the question, do I want to get tested or not. There are so many questions that come along 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 that will love me for me knowing the inevitable? If I'm positive, when will I start seeing symptoms? Will I be able to live with the fact that I have a fatal genetic disease brewing inside of me? I could go on.... I made the decision to get tested for a few reasons:
1) Because I knew that if the results were that I was gene positive, I could walk along side my father, lift his spirits, show him that it will all be ok, and that he didn't have to let HD define him, and that there was a beautiful life out there to be lived.
2) Because Knowledge is power. I am blessed that I have the opportunity to prepare for my future. Past generations were not as fortunate.
3) Because more than anything in this world I want to be a Mother and there will be decisions I will have to make with that.
January of 2017, just 5 months after my Dad was diagnosed, I tested positive for the faulty gene that will some day develop Huntington’s Disease. Sure I was scared and had a million questions in my head that I knew could never be answered like when, how, or why, but I felt a sense of peace, I could feel God’s love and purpose for me. I had just found my purpose in this life.
It wasn't until I attended a women’s conference called Flourish at River Valley Church that my life would change forever. During that time, I was worried about my future and I was taking a step back from everything I wanted in life. I had so many questions about what I "should" do to prepare for my future. In a sense I was planning my funeral. I was so fixed on what my life will end up being in the end that I stopped living for today. I no longer wanted to have children, I didn't want to be in a relationship, and I was no longer thinking about going back to school. I kept telling myself that I was doing it to protect other people. It wasn't until attending the Flourish conference that I truly understood the importance of flourishing and how big of an impact it had on my life moving forward.
I needed to learn how to go beyond being just OK with my life and start to really thrive, creating meaning, happiness and well-being for myself and others. Life will continuously change our journey, test our faith, and rob us of our strength. The truth is, we will wake up thinking life is hopeless sometimes. Our job is not only to fight these feelings but also to live heroically, to function well even when life tries to get us down. Once you get into the habit of disputing negative beliefs, your daily life will run much better, and you will feel much happier. It's really that simple.
I made a Promise to God and to myself, that I would love this life. That I would love myself and trust that God wouldn't give me more than I could handle. No one is promised a long healthy life, but we are all given a life to live and we choose how we want to live it. I chose to have hope. Researchers have already come so far in the past 20 years and that was something to be excited about. Life is a series of thousands of tiny miracles, we just have to notice them. If you would have told me a year ago that I would be serving on the Huntington’s Disease Society of America Minnesota board, that I would be a regional lead for the National Youth Alliance for HDSA, or be involved in a few clinical studies, and receive an awarded for Giving a Voice to HD, I’d say no way! But with the support of my family, friends, and the HD community, I am doing just that!
We must not be ashamed of our stories, because it is our story that will inspire others! -Xo Darcy
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