Caring Voice

Close Up: Cheryl Sullivan Staveley

When I first heard about Huntington’s disease (HD) I was in nursing school in 1978. I was talking with a school nurse about my upcoming wedding to John Sullivan. She recalled caring for John’s mother, who died when John was 14, and asked if I knew that she had died of HD. John’s family had been told by the family doctor that she died of heart failure, so I thought the nurse was mistaken.

Still, it nagged at me. Later that day, I looked up HD in one of my textbooks and found only two sentences on it. In my senior year of nursing school, I wrote a paper on HD and I remember being so grateful that John’s mother didn’t have it.

John and I thought it was safe to have children. In 1981 our daughter Kaitlin was born, and in 1987 our daughter Meghan followed. In the summer of 1989, during a long car ride to Niagara Falls for a family vacation, I noticed John’s shoulder shrugging and finger tapping. I started recalling everything that I had read about HD. Then in December of that same year, one of John’s colleagues at the police station called to say that many of the officers were concerned about him—his loss of balance, facial grimacing, and deep-knee bending. Something just didn’t seem right. Once I received that call, I knew John had HD. It was like a dagger in my heart. Within two weeks he was diagnosed.

That was essentially my initial foray into HD. Right away John and I decided two things: we would educate our girls about the disease and we’d fight it every step of the way. We felt a responsibility to advocate. If we didn’t, who would?

John died in September 2008 at the age of 56. But, from 1989 to 1997, he was still able to work at the police department and was promoted to captain. He also ran the Boston Marathon. John did remarkably well and had seven good and productive years after his diagnosis.

Kaitlin and Meghan always said that they were more afraid of the unknown, rather than the known, and they both knew at some point they would test for the HD gene.

Meghan had juvenile HD. She was officially diagnosed at age 19, but I suspected it as early as 13 or 14. It was extremely subtle, cognitively, but the symptoms progressed rapidly from the time of diagnosis in 2007 to the time she died in 2014.

Kaitlin was 25 when she was tested. She and her husband wanted to have at least one child and didn’t want to perpetuate the HD gene. Fortunately, there are now ways to ensure that you have a child without the HD gene.

Once Meghan was diagnosed, I left my job as a nurse so I could focus fully on her, and on the education and advocacy of HD. I had been advocating since John was diagnosed, but having my daughter test positive for the gene made it even more impactful and I wanted to do more. I had the good fortune of being able to travel for about three years with Meghan to various speaking engagements.

I’m compelled to advocate because I need to honor my family. This is my duty. I’m going tell everyone in the world that I can about HD with the hope that someday there will be a cure. It might be too late for my family, but if I can help prevent this from happening to another family, then that is my mission.

I joined the CVC Board of Directors in July 2015. I do a lot of work at the local and national levels for the Huntington’s Disease Society of America (HDSA) and I’ve been fortunate enough to speak to my U.S. senators and congressmen in Washington, DC, as well as my state senators and congressmen in Boston. I also continue to speak at colleges and civic organizations, and I run two support groups in Massachusetts.

Today, Kaitlin remains symptom free. My granddaughter, Teagan, will be 7. She does not have the HD gene.

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