"My journey with HD began in 1978. My college sweetheart, John, had three sisters who were wonderful friends of mine. I learned their mother had Huntington’s disease (HD), but that was a secret John’s father kept from the children until later in their lives. There wasn’t much information about HD back then, and when I researched it, I was scared. I didn’t know if I was brave or strong enough to stay with John, since the HD gene was in his family and he had a 50/50 chance of inheriting it. I loved John and his sisters dearly, but I was petrified. I broke off my relationship with him.

John was patient and understanding, yet persistent. He was still in my life. He even came to my college graduation. I realized no one knows what will happen in their lives, so if John did develop HD, I would take care of him because this is what you do for the people you love. I went back with John and we soon married. We talked about having children, which was another difficult decision without knowing if John carried the HD gene. We went ahead and started a family. We were going to live our lives as fully as we could.

John’s three sisters—Lora, Marcia, and Cindy—developed HD, each at different points in their lives. John and I cared for his sisters, had our routines with them, and included them in our family life with our children. As I mentioned earlier, that’s what you do for the people you love. When Marcia and Cindy required more specialized care, we reached out to my friend Pat, who ran a residential care facility where we were able to place them. Each sister had their unique struggles with HD and, sadly, they all passed away from the disease. In 2016, both our children were engaged to be married. John felt he owed it to them to know his gene status so our kids could make informed decisions about starting their own families. John tested negative—he didn’t have the HD gene, which also meant our children didn’t and any future grandchildren wouldn’t, as well.