Hi everyone! My name is Melissa, I am 29 and from Columbus, Ohio. My mom passed away from HD on February 14th, 2008, shortly after her 59th birthday. My mom was symptomatic for as long as I can remember. I began cooking and cleaning and looking after my mom when I was 8 years old. I remember watching her fall asleep and wondering how she could sleep when her foot was shaking uncontrollably. I was told that it was because of Huntington’s disease but that is all I knew. Growing up with a parent with HD is hard and honestly, it just stinks. I would have to say though that it has taught me compassion, unconditional love, strength, and perseverance. I see this in every NYA member that I meet and that alone continues to inspire me.
I thought my mom was the only one with HD. Although I did a couple projects on HD in school there wasn’t a lot of information about other families or organizations. (Google wasn’t invented until middle school). I decided to test when I was 24 – and although I was certain that I was just like my mom in every way, the test result was negative. Just after my results, I located a local HDSA support group and spent my first meeting crying uncontrollably and barely being able to tell my story. Look at me now! The tears represented my being completely overwhelmed and filled with a type of relief that can only come with being in a room full of people who just GET IT.
A year later, I attended my first convention in Jacksonville FL on behalf of my chapter’s scholarship. I arrived a day early and noticed a sign displayed for “NYA Day” so I figured I would check it out. I slowly crept up to the table and immediately recognizing my “newness”, Amanda jumped right up from her seat and ran over to greet me. After letting her know this was my first time there and that I didn’t know what the NYA was, she brought me right over to a table and introduced me to Kaitlin and Tiffany. Meeting the NYA changed my life. CONVENTION changed my life. I can’t even begin to describe the feeling of meeting so many people who were my age, who were going through what I went through. I want and hope that every member of the HD community can have this experience. Since then, I have been a member of the NYA board and my passion is to find others who were just like me- and introduce them to all of the love, support, and resources we have to offer!