Travel and Huntington’s disease are parts of our marriage

Stu Hopper, left, and Carlos Contreas take a photo in Tenerife, one of the Canary Islands, on a cruise stop by the Royal Caribbean’s Explorer of the Seas. (Photos courtesy of Stu Hopper)

This is Stu Hopper’s story:

Carlos Contreas and I, Stu Hopper, met 23 years ago in Florida, where we live in a Fort Lauderdale condo on the beach. Carlos immigrated to Florida from Peru by himself at age 18. I immigrated to Connecticut from England at age 2 with my mom and dad, moving to Florida at age 26. Carlos and I always thought it was great that while we were each born on different continents, we met by chance in the U.S.

In October 2012, while visiting Honolulu, I proposed by accident. Carlos instantly said, “Of course, I will marry you.” By chance, fireworks went off over the bay as Carlos spoke. Being gay, I’d never thought of marriage, especially since Florida at the time made it illegal and otherwise fought it. 

On May 16, 2013, we married in New York City. Carlos is my single greatest achievement in life. He completes me 100%.

Hopper, left, and Contreas see Royal Caribbean’s Freedom of the Seas as freedom from Huntington’s.

We were unaware Huntington’s disease ran in his family, but he was diagnosed in January 2019. I was so happy we found what he had — until I got home and did an internet search on Huntington’s. 

Carlos told his niece, “Do not cry for me. I am happy. I am here, and they may cure me yet, and I am not scared to die.” He also stated that he wanted to participate in clinical trials to help find the cure for others if not for him. Carlos is the happiest guy in the world and is always laughing. 

He’s been part of the Kinect-HD and Proof-HD trials at Vanderbilt University in Nashville, Tennessee, and hopes to be in more.

We also discovered Help 4 HD International and are involved with all of its events and educational efforts. I’ve given a few speeches on the pros and cons of clinical trials. We’re living with the disease, not studying it.

Meanwhile, we’re traveling the world together. 

In December, Carlos had an awful setback with aspiration pneumonia and came out of the hospital with a feeding tube and, after a second hospitalization, was on hospice care. We’d booked a cruise from Miami to Barcelona, Spain, a year before, and Carlos still wanted to go. The cruise could not have gone better. We’ve now completed six more cruises with Royal Caribbean. We’ve found that they’re the perfect environment for us, and each time we come back stronger. 

We’re happy to report Carlos is off the feeding tube now and doing extremely well. Our next cruise returns us to Barcelona, and we’re always looking for Huntington’s friends to join us.

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 one, using the hashtag #HDSpotlight, or read the full series.