A Huntington’s love story: Finding love in a hopeless place

From left, Erika and Melissa Boulavsky celebrate on their wedding day. (Photos courtesy of Melissa Boulavsky)

This is Melissa and Erika Boulavsky’s story:

Both of our stories begin with and continue to be shaped by the Huntington’s disease (HD) community. We both come from families affected by Huntington’s; it’s an extremely familiar strand that connects us, even though our journeys began differently.

Melissa Boulavsky: My mom started having Huntington’s disease symptoms before I was born. The psychiatric and cognitive symptoms became more noticeable as I was growing up. I was 8 when we lost our house, and that’s when she was tested and diagnosed with Huntington’s. Over the next few years, I became her caregiver. When I was 11, she was placed in a nursing home. She was 59 when she died Feb. 14, 2008.

Since then, I have tested gene-negative. I was sharing my story at a National Youth Alliance retreat in Denver in 2016 when I first met Erika. We dated long distance for two and a half years before agreeing to both move to North Carolina in January 2020.

That summer, my oldest brother started showing symptoms of Huntington’s. We agreed for him to live near us, and since then, I’ve been his primary caregiver.

Huntington’s is forever a part of our lives. We try to balance our time and continue to nurture and grow our relationship so that we can be the caregivers we need to be. We got married Sept. 21, 2024, on our seventh anniversary. In our vows, we promised to love each other, be patient, and communicate. These vows mean so much more with the weight of Huntington’s, but we agree it will never hold us back.

The Boulavskys attend an HD Reach Education Day.

Erika Boulavsky: Huntington’s disease has been a part of my life since I was a child, when my grandmother was diagnosed. We didn’t realize it was genetic until my mom was diagnosed when I was around 10 years old. Resources then were limited, and my mom was trying to navigate her own diagnosis and the care my grandmother needed, while also supporting me.

As much as my family wanted to be open about it, it wasn’t something people talked about. Plus, protections for those with genetic diseases were severely limited. I’m fortunate that my mom found support through a nonprofit founded by Mary Edmondson, MD, called HD Reach.

Now, I work for HD Reach and hope to support as many families as possible by connecting them to resources and community. Volunteering in the Huntington’s community helped me meet my wife, Melissa. Since we’re both impacted by this disease, we have a shared sense of purpose. We are meant to do what we can for our loved ones while also improving resources and support for others. Melissa keeps me grounded, focused, and is always just a room away to throw out random ideas. The foundation of our marriage is love, respect, communication, and community. As we navigate day by day, we do so together, with and for our family.

In recognition of Huntington’s Disease Awareness Month in May, the Huntington’s Disease Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by Huntington’s, written in their own words. Follow us on Facebook, Instagram, or X for more stories like this, using the hashtag #HDSpotlight, or read the full series.