Huntington’s Disease was something I had never heard of until 1996. My now deceased ex-husband, H Patton II, and I were discussing having children. We both wanted to be parents and he knew his mother had Huntington’s. The cost for counseling and testing was beyond our capabilities so we decided to put it in God’s hands. Our family went from the two of us to welcoming our son, followed shortly by our daughter. Years later, we separated and divorced. What I thought was, we were just two young people who had grown apart. I came to realize, after H got his results, his changes were from inheriting HD. If only I had known.
Our family pushed through and was still able to make life as normal as possible for our children, even with separate houses. We worked through job loss, driving privileges being taken away, angry outbursts, his twin brother Homer (who also has HD) coming to live with us, near arrests after being mistaken for being drunk in public, suicide attempts, a stay at a behavioral center, and being evicted by their landlord on Christmas Eve. And that was just some of what we faced before finally accepting that H and Homer needed to move into a nursing home. That was another nightmare. Being under 55, no one wanted to accept them as residents and if they even knew what Huntington’s was, they did not want to accept someone with that diagnosis. Once a nursing home was found, it was a constant worry that they would do something to get removed from there.
We continued to stay strong and rely on each other. I found HD Reach and we began to attend the support group meetings. My daughter went to an HDYO youth camp and met others her age she felt more comfortable talking to. We attended Education Day and met so many families and learned so much. We tried to stay as informed with the latest news and updates as we could.
We lost H 2 years ago at the age of 48. Our kids have gotten tested and we are dealing with one who is negative and one who is positive. With the negative came the survivor guilt. With the positive came the what now? But our family didn’t stop there. My son now streams for Game Over HD. The 3 of us are on the Family Advisory Board for HD Reach. I spoke at the Board of County Commissioners meeting in Forsyth County to declare May as HD Awareness Month. We are sending letters to the FDA and to our elected officials. We fight, we pray, and we hope for a future that includes better treatments and hopefully a cure. HD may keep putting speedbumps in our way but we are gingerly getting over them.
