When I last met with Jesús Cabrera in Barranquitas, he was wearing a t-shirt in honour of his ‘primo.’ Primo is a cousin. Jesús cared for his beloved cousin until his death in 2024. From a family scarred by HD, Jesús is not ashamed, but carries the burden with a depth and commitment to care and advocacy that is unfathomable to those of us living outside his reality. Jesús’ reality is that he is at risk for HD and continues to care for his remaining cousin and his dad, who are both in the advanced stages of the illness. For years, he fed, washed, and helped bring laughter to three family members dying with HD.
Life Must Go On
Jesús is also the head of the household where his grandma and younger sister live. Life must go on — there’s really no choice, but his faith and personal philosophy carry him. We filmed him for our documentary La Luz about caregiving in Barranquitas. Once a self-admitted “bad boy,” he shunned a criminal pathway (which is easy to follow in this remote town) and became a teacher — turning, as he says, “pain into light,” caring for his physical self to allow him to manage his fear of the future. He is a good-looking young man with a smile and presence which illuminates the room. He’s a great teacher. I’ve seen him teach — he holds the space.
I know that there are young women in Barranquitas who would love to stand by his side. My colleague Marina González de Kaufmann, President of Habitat Luz (the organisational partner of Factor-H in the Maracaibo region) accompanied him to the HDYO World Congress in 2025 in Prague. Marina noted that there were many attendees who were enamoured by his presence. He would love to be married and have children, but he has shunned that idea because he does not know his genetic status. There’s no genetic testing or psychological counselling available at present. Regardless of his situation, Jesús can party and laugh and flirt and dance, like so many Venezuelans, like he has no care in the world.
A Member of Our Team
Even with all his personal responsibilities, Jesús is now formally a member of the Factor-H team in Barranquitas, teaching kids to read and write. Factor-H established informal “little schools” to help many of the at-risk kids to get ahead, and education is one such strategy. As a respected member of the community, Jesús guides others’ actions. The last picture I saw of him was him feeding a particularly helpless woman with HD whose close family had abandoned her. I remember his tears and his eloquent argument about caring for the homeless and most destitute in his community.
Still Human
I may have painted the portrait of a man without vulnerabilities, because that’s what the word resilience suggests. The word resilience suggests some kind of thick skin against adversity. No — Jesús cries, Jesús needs time alone, Jesús can be disagreeable. He is, after all, human; he represents the “human” in humanity, and that balance is part of resilience too. Jesús represents the many faces of resilience in this town.