A Huntington’s disease love story and a life together

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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.'
A family of four pose in a large, indoor lodge, with large forested mountains in the background. From left is a young, possibly teenage boy, followed by a middle-aged father, a middle-aged mother, and a teenage daughter.

From left, Roman, Todd, Brandy, and Meara Niemiller pose for a photo. (Photos courtesy of Brandy Niemiller)

This is Brandy Niemiller’s story:

On Valentine’s Day in 2001, I was an 18-year-old high school graduate who was unsure about where I was headed in life. That day, my long-time friend and recent crush, Todd, called and asked me on a date.

I had been pursuing Todd for a few months at that point, but he was hesitant to get involved in a relationship. He had already informed me that he was at risk for a rare, hereditary disease and couldn’t envision himself leading a “normal” life. I did as much research as I could at the time and convinced myself that there was no way this boy I had known since middle school could have this disease. And anyway, I was a smitten teenage girl, and Todd was the sweetest, most genuine boy I had ever known. We’ve been inseparable since that day.

A teenage girl dressed in full riding gear holds the reins of a horse in a stable.

Brandy and Todd Niemiller’s daughter, Meara, 17, has been riding horses since she was 5.

Fast forward to the present and we’ve been married for 21 years. We have two beautiful and incredibly talented teenagers, Meara, 17, and Roman, 14. Meara has been riding horses since she was 5, and Roman plays the electric guitar. Both are extremely dedicated to their interests and are on the honor roll at school. Meara was inducted into the National Honor Society last year.

Todd and I both have college degrees and successful careers. We own two homes and way too many dogs, cats, and horses. We have worked hard to create a good life for ourselves and our kids and are fortunate to have a strong support system.

A few years ago, I started noticing some changes in Todd. He became less patient with us, more forgetful, and less coordinated. We both attributed it to life stressors; during this time he had dealt with a herniated disc in his back and we had lost his brother to Huntington’s disease (HD).

I was so sure that with his age we were in the clear. Everyone else in his family had developed symptoms at a much younger age, in their 20s. Even now, at 41, Todd’s symptoms are mild in comparison. But last August, we were no longer able to deny it, and he received his official diagnosis in November.

A teenage boy stands on stage playing a Flying V electric guitar, with guitar pedals on the ground before him. The stage has a red backdrop.

Brandy and Todd Niemiller’s son, Roman, 14, plays a Flying V guitar.

While it has been devastating to our family and has completely shifted our outlook for our future, we continue to try to make the best out of life. Todd has chosen to take a proactive approach to his health by increasing his exercise, eating a healthy diet, and participating in clinical trials. He also has maintained a positive outlook about his future.

In 2001, when I first learned of HD, there was so much shame and stigma surrounding the disease. I hope that by sharing our story people will see that life is still very much worth living with HD.

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.