Although I just joined the NYA a little over 2 years ago, HD has been a part of my life since before I can remember. As a child, I remember asking my mom who the young girl and the man in the uniform were in the picture frame near her bed. It was her father and sister that passed away from HD. All I knew about HD was that it took my grandfather and aunt before I was able to meet them.
After my parents separated when I was two years old, my mom did what every other mother would do, protect her girls. To her that meant to run, and isolate us from everyone. That is when it started, that is when HD started taking my mom. Although my mom started showing symptoms, she was not tested until years later. The only people around her was my younger sister and I, and we didn't know anything was wrong. She was our mom, that was all we knew. Finally after more falls, being misdiagnosed, not being able to work or drive for years, she was finally tested for HD. The day she tested, I was physically an eleven year old girl, who quickly transformed into a thirty-five year old caretaker. For that day forward, I knew it was my job to take care of my mom and sister.
It was not until after my mom passed away, that I found out there were other people that knew about HD, that there were other people affected besides my family. My entire life, I felt as if no one else understood me, my mom, my family, or what we have gone through or are going through. I felt so alone for so long and knew I wanted to start helping however I could. About four years ago, I decided to join the HDSA GNY Chapter. Since then I have met so many amazing people that understand my crazy HD life. I decided to dedicate my life to spreading awareness whenever and however I possibly can. If people do not know about HD, how can they help?
After finding the NYA, I have finally found a place where I feel like I belong. I have met the most inspiring, courageous, strong, and amazing people that I am lucky enough to call my friends that are like family.