I hope 2024 brings a new tradition for HD families

The notion of tradition is on my mind because we recently celebrated Christmas.

Tradition comes from a Latin word meaning “to hand over” or “to hand down.” Sometimes family traditions are fun and wonderful, such as weekly game nights or favorite dinners like Taco Tuesdays.

But others are ones I can do without, such as Huntington’s disease (HD), a terminal illness that’s been passed down in families for generations.

As you might surmise, my wife, Jill, and I decided to name this column “A Family Tradition” because, sadly and unfortunately, HD exists on her father’s side of the family. It’s been handed down through many generations, adversely affecting multiple family members, including Jill and our daughter, Alexus.

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The concept of tradition was on our minds in 2008, when we moved to a suburban town near Chicago, far from family. At the time, we didn’t know that Jill and Alexus were gene-positive for HD. We also didn’t know anyone in the Midwest. Because we couldn’t afford to travel, when Thanksgiving and Christmas approached, we felt sad about missing our families back home in Florida.

Our solution was to create new traditions, especially during Christmas. Our daughter, who was a child then, lobbied for us to open presents before Dec. 25. She also wanted to sleep late on Christmas Day. (Because why wake up early if the presents are already opened?)

Jill and I were OK with all of that.

We also decided that, after church, Christmas was about hanging out in pajamas, watching bad Christmas movies, and helping Jill cook her delicious steak fajitas.

Three years ago, we moved again, from the Midwest to the East Coast. But life is different now. Alexus is an adult. She’s married and living in Boston. Our beloved dog, Baby Girl, is dead. Because of all these disruptions, many traditions have been upended.

At the moment, Jill and I don’t want any new changes. There’s been enough drastic ones in the last several years, due to the HD diagnosis and the pandemic.

But, like many of you reading this column, our biggest hope is for there to be the best new tradition of all time: not having to worry about HD being passed down through generations because a cure has been found.

That would be the Christmas gift definitely worth opening before Dec. 25, 2024.

Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.