The image below has become symbolic for me. During my second visit to San Angel, a rural area in the State of Magdalena in Colombia, I visited a few families dispersed in the countryside, isolated from the rest of the world, a countryside that hides many patients away from aid, and from shame. This area is also iconic for me, as it highlighted the desperate need of some of these families. When I first visited in 2013, none of the families had seen a doctor, let alone met a scientist working with Huntington’s disease. Over 100 people came that day, grandparents, parents and children, at risk and sick altogether, to see what I had to say. Some had traveled by foot or donkey for hours to see me. It was a new world that had been hidden to the world of science and medicine. How many other HD families lived dispersed in this region?
Manuel was already sick then - I think he was 19 years old, he barely spoke and was very rigid, as it is common with juvenile HD cases. But he had done the trip nonetheless. In 2016, when I went back to visit them at their home in San Angel, he was still able to walk, but did not speak at all. His father was dying with HD, and starving as the family was (is) very poor. His mother Doris took care of him and his dad as best as she cook - they had no furniture, no running water and no electricity. Manuel had a sister, and lived also with Eduardo, the kid without shoes who triggered the idea for Project Abrazos. In the middle of the visit, Manuel suddenly got up from a plastic chair, jumped on the donkey, and took off. I still remember standing there, astonished that he did not fall from the donkey as he moved away in the distance. “Where is he going? I asked”
“He is going to sell milk. He does this a couple of times a week so we can eat”, said his mother.
The picture is one of resilience and desperation all at once.
Manuel wanted to help his family. In spite of his condition, he knew that he had to help his dad, or he would starve to death. Manuel just passed away last week, of juvenile HD. He had been sick with pneumonia, but I was not expecting him to pass so soon. His dad died last year after many years of suffering with HD.
Last I saw him was a year ago, where he joined the rest of the kids from Project Abrazos in San Bernardo del Viento, on the Caribbean coast. For the first time, he got in the pool with the other kids, and enjoyed being in the water. I’d like to think that, during that trip, he was happy. Manuel was affectionate, and cared for his family a lot.
His life, like many others here, was difficult and lived in obscurity. But I will not forget him.
To me, he will always be riding his donkey into the distance, independent, determined, and committed to helping his family. That’s a lesson for all of us.
Rest in peace, my friend Manuel.