My husband has Huntington’s Disease (HD).  I met Adam, then 16, in 1989.  I was fifteen—he was my first love.  After going our separate ways for college, we reunited in 1994. When we became engaged in 1997, I knew Adam was at risk for HD.  We married in July of 1998.
After his mom died, at age 53, from HD in 1999, Adam tested positive for Huntington’s Disease.  Married for just over a year, the news devastated me.   I sadly reconstructed the dreams I had for our family and our future.  In 2002, while we were investigating adoption, I unexpectedly, and quite miraculously, got pregnant.  We pursued prenatal testing, and the results indicated that our baby girl was HD negative. We banked Kelly’s cord blood—you never know…

In 2009, after 11 years of marriage, I noticed that Adam was in the early stages of HD.  He began regular neurology appointments.  As time progressed, I felt the power that HD had to put me in a fearful and paralyzed place—isolated and sad.

In 2011, I made the decision to speak out about HD.  I decided to address my network of friends and family to advocate for HD.   After all of the years feeling isolated and that I should keep Adam’s HD, “hush hush,” this took me out of my comfort zone. For me, advocacy put a positive spin on HD in our lives.  Advocacy is a way for me to make a difference for the better. 

I am proud of my husband, Adam’s, strength as he battles HD. I am proud of my daughter, Kelly’s, compassion, as she struggles to understand her dad’s HD.  I am proud of my attempts to make a difference through advocacy for Huntington’s Disease Awareness. Here’s believing in a cure…

 


 
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