Sierra Cullins

Jeffersonville, Indiana

“I will not cause pain without allowing something new to be born, says the Lord” Isaiah 66:9 NCV

When my Father was first diagnosed with Huntington’s disease in 2009, it seemed like an unknown storm began to brew on the horizon of my life. I knew that this was something serious but I didn’t have much knowledge of what it might mean. Though as my family has walked this journey together it seems that even as the dark clouds continue to hover, rays of light begin to peek through. In 2011 we went to our first HDSA National Convention, and it’s like the sun rose again. There were people there who could understand! People who shared the fears and anxieties that no one else ever could! Ever since, in the two conventions we’ve been to and all the walks and support groups, that the community of people I now call my HD family has been such a blessing to me. Even though we don’t see each other as often as I would like, it’s like a family reunion every time we do. Convention is usually full of laughter and jokes, as we come together to encourage each other.  Sometimes, you just need to act a little crazy! The support and love that I get from everyone, I’m sure will last forever.


Living at-risk, with multiple family members slowly declining to a debilitating disease is a terrible thing to have to go through. Still, I have to believe that even in the darkest terrible times; there is still the potential for much good. When my Father went to get the results of his genetic test, the reaction that my Mother and he gave will stay with me forever.  The Doctor verified that my Dad did have HD, and my parents knew at once that in the face of this realization, something good would come out of this. Smiling through their tears, they held on to faith and hope. The thing is, bad things happen to everyone. No matter who you are, or what you do something is bound to come about that takes you off your feet. What REALLY matter is what you do when that happens. For me, I choose to hold on to faith, hope and love even when it’s almost impossible in the face of uncertain odds and challenges.


I hope you will, too.