I’m grateful, despite my wife’s diagnosis of Huntington’s disease

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by BioNews Staff |

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Five photos showing people affected by Huntington's disease, who are sharing their real-life stories during Huntington's Disease Awareness Month, are hung with clips on a string above the words 'Community Spotlight.'

Martin and Sara Gardea pose for a photo on their wedding day. (Photos courtesy of Martin Gardea)

This is Martin Gardea’s story:

I met my wife Sara in San Francisco. We’re both artists and are the creative type. Our first date in 2012 was to the San Francisco Museum of Modern Art.

Sara and Martin Gardea are seen celebrating Halloween in San Francisco.

Early on, she told me Huntington’s disease runs in her family, and that her sister Erin was diagnosed with juvenile Huntington’s. She said she had a 50/50 chance of developing the condition herself.

Sara is such an amazing person; this possibility didn’t stop me from wanting to be with her regardless of what the future would hold. When working on projects, Sara never sets the bar low — she goes far and above the minimum, and not just on art projects. This helps us live life to its full potential.

San Francisco was great, but by June 2015, it was time to move on. We moved to Wisconsin so Sara could be closer to family. In September 2015, we got married in Spring Green, at House on the Rock.

Shortly afterward, we moved to Chicago, and I started noticing different little things in Sara’s behavior. I shrugged it off at first. But when I brought up her getting tested for Huntington’s, there was little hesitation. Because of an insurance issue (it’s a very long story), it took almost a year for her to get an appointment. Chicago has two Centers of Excellence. We are thankful for that.

Martin Gardea kisses his wife Sara on their wedding day.

In April 2021, the results came back positive. When we first met, Huntington’s was a possibility. Now, it’s a reality.

Sara is 42 now. I’m 39. After the positive test, Sara didn’t want to hide it from anyone. She was very open with friends and family, and wanted to avoid the stigma of not wanting others to know. Slowly, we started telling friends about her diagnosis. The most common thing said to us was: “If there’s anything we can do to help, let us know.”

Because most of our friends are creative types, I asked Sara if she’d be OK if I asked our art friends to donate a work for auction to raise awareness for Huntington’s. We’d have all the proceeds go directly to the Huntington’s Disease Society of America. Sara gave her approval, so I reached out to her social worker, who got me in touch with someone from the organization to do an art auction online. The process took several months — and grew our support system exponentially. People from around the world saw our fundraiser.

I feel like in the face of something you can’t do anything about, it’s fierce to do something. Something.

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 and Instagram for more stories like this, using the hashtag #HDSpotlight, or read the full series