A tribute to Carlos Contreras, a fearless HD warrior who chose joy

On September 2, the Huntington’s disease community lost one of its brightest lights: Carlos Contreras.

Born on May 22, 1976, Carlos’ journey was filled with joy, resilience, and an unwavering commitment to love. His life reminds us that even in the face of a devastating disease, it is possible to choose happiness, dance through the darkness, and inspire countless others along the way.

Carlos grew up in Lima, Peru, in a close-knit home surrounded by family. The youngest of three, with two older sisters, he was lovingly doted upon by his parents, siblings, nieces, and nephew. He was the “baby” of the family, known for his smile and protective nature. Music, food, and laughter shaped his childhood, and even then, Carlos dreamed of one day moving to the United States and visiting London. He would later achieve both.

Recommended Reading

May 19, 2025 News by Andrea Lobo

Huntington’s patients see day-to-day variation in symptoms, function

His spirit soared

At 19, Carlos arrived in the U.S. speaking only Spanish, ready to build a new life. His natural warmth and openness helped him quickly form bonds. At 26, he met the love of his life, Stuart. What began with a spark at a party grew into a partnership that lasted more than 23 years. Stuart recalls that Carlos never raised his voice and never met anger with anger. Instead, he smiled, a quiet reminder that happiness is always a choice.

They were married in New York City in May 2013. For Stuart, marrying Carlos was his greatest achievement. Together, they built a life rooted in unconditional love, faith, laughter, and shared adventures.

If there is one word to capture Carlos, it is joy. Carlos loved to dance, and he made sure others danced with him. On cruises, where he and Stuart spent so much time, Carlos was the first on the dance floor and the last to leave. Strangers who hadn’t danced in decades joined him, inspired by his courage and delight. He turned ballrooms into places of healing, showing that even as his body struggled, his spirit soared.

Carlos and Stuart traveled widely over the years, taking 11 cruises, two of them transatlantic. They also visited the Panama Canal and went to Hawaii for a wedding. At each stop, Carlos made friends and left behind a trail of joy. In 2023, his dedication and positivity were recognized when he received the Help 4 HD Inspiration Award.

Huntington’s disease never defined Carlos, but it did shape his journey. From his early symptoms of clumsiness and slurred speech through the relentless progression of chorea and cognitive changes, he accepted his reality with grace. He was unafraid of death, telling his niece shortly after his diagnosis, “Don’t cry for me. I am here now. I am happy. They may save me yet.”

Carlos participated in clinical trials that contributed to uniQure’s advancement in gene therapy research. He wanted to help others, even if he couldn’t be saved himself. During difficult times, faith, travel, and his love for Stuart sustained him. Though medications couldn’t always calm the “fatal anxiety” that haunted his last two years, the comfort of touch and the embrace of love often did.

A legacy of joy

Carlos’ legacy lives in his smile, his joy, and his unshakable philosophy: “Be happy. What is the alternative?” This simple yet profound wisdom carried him through hardships and inspired everyone around him.

He loved music, strawberries, milkshakes, and cuddling during movies. He adored the beach, which Stuart lovingly called “Carlos’ office.” And no matter where the two went, Carlos held Stuart’s hand, a small act of devotion that spoke volumes.

Carlos died just six days before a cruise he and Stuart had planned with other Huntington’s families. To honor his memory, Stuart hopes to establish an annual scholarship in Carlos’ name to send a juvenile Huntington’s family on a cruise to experience the joy and freedom that Carlos found on the open seas.

When asked what he would want others to remember, Stuart is clear: Carlos’ happiness, courage, and love. His spirit of acceptance. His fearless dancing. His smile. And most of all, his reminder to the world that joy is always possible, even in the hardest of circumstances.

Carlos taught those around him how to live fully, forgive quickly, embrace love without conditions, laugh easily, and choose joy again and again. “He completed me,” Stuart said. “He made me happy. He was my world.”

To those who mourn him, Carlos leaves behind more than memories; he leaves a call to action: to live as he did, with courage, love, and joy. To dance, smile, and choose happiness, because as Carlos always said, “Be happy. What is the alternative?”

Rest in peace, dear Carlos. You will be missed.

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.