Havanna Lowes


My name is Havanna Lowes. I am fifteen and at-risk for Huntington’s Disease. At the age of about nine, I found out the Huntington's Disease is in my family. My aunt was in the late stages at the time and I guess my mom, Melinda, kind of felt obligated to tell me. When my mom told me, she came out with it blatantly. She called me into her room to talk, sat me down on her bed, and just came out with it. She said that we have a terrible disease in our family. She explained that her dad had passed away from HD when I was two, and that three of my four aunts had it. She also said that she was tested gene positive but showed no physical symptoms. Then she said that I have a fifty-fifty chance of getting it. I didn’t freak out too much, but just the initial fact of, you may or may not have a disease scared me. After that talk, my mom started getting extremely involved with the NYA. She was on the board for a few years and was even president of the NYA for 6 months or so. I also ended up signing up for the NYA.
I lost my aunt Becky in 2008. Then in 2009, I went to my first HDSA National Convention in Phoenix, AZ. When I went, I was amazed at how many other people had HD in their family. I loved the community and how I had friends who understood HD. I went again the next two years and brought along beaded bracelets that my family and I made to raise money for the NYA. Then in October 2011, I lost my aunt Jess. I guess I didn’t really understand what it meant to lose someone, until I lost her. After that I wasn’t able to attend the next two conventions, but I still wanted to make a difference. I have attended so many Team Hope walks, I cannot even count them. This past August, I lost my aunt Tina. That was my first year of high school, so I already had a lot going on and losing her just broke me. After coping with the loss, I realized that I want to help people with HD. I became a small advocate. I did small things like telling all of my friends about HD and how it affects me. Now half of my class knows vaguely what Huntington’s Disease is. A few months later I went the 2014 HDSA National Convention. I met so many amazing people. I hope to continue to raise awareness for our fight to find a cure.