No matter how many patients we meet along our journey, it is always difficult to say goodbye.
Death is inevitable. For our friends suffering with HD, it comes earlier and always in tragic circumstances. However, there are moments in life that are impossible to forget. The pictures below were taken during our Christmas celebrations in 2019 in San Luis, Maracaibo.
Darwin Soto was an outgoing person, and we would always find him sitting in front of his home, a small house of corrugated zinc, with no furniture inside. He would always be wearing shorts and nothing else, no shoes, no shirts. His elderly mother always cared for him and his sister, who also suffers from HD. Darwin never left the area surrounding his house, but when we organized a dinner party for the patients of San Luis, he came, smiling as usual, clean, dressed and with shoes, he ate, danced and enjoyed an evening full of celebration of his life and of the lives of the other patients.
The first time I met Darwin was in 2013 and will never forget his kind face and his smile. Darwin Jose Soto came into the world 41 years ago, on August 7, 1978. He started having symptoms at 30, when he had to stop fishing due to the disease, a profession he exercised since he was 15 years old. He inherited the disease from his father. Darwin had 8 siblings, two of them passed away from HD as well, and his sister is now also affected. Darwin leaves behind 2 children, and a deep void in our hearts. His life is not forgotten, and I will always continue to see his smile when I pass his family’s humble home.
Maria Gotera was ubiquitous in the town of San Luis. Ever since I met her she wandered the streets looking for food and company. She would come and hug you all the time. In the pictures below, she is seen dancing with our friend Gianni from Italy, during the same Christmas dinner celebration. The image of Maria dancing with Gianni became a symbol of the amazing experiences that kindness and care can bring into our lives. During those brief moments, while dancing, HD was forgotten. Patients were simply human beings having a good time, enjoying the music, which too often had been absent from their lives. Maria was the sister of Argenis Gotera, our friend Anyervi’s father, who passed away last year (Argenis and Anyervi came to meet Pope Francis representing their community). Maria has a sister living in the late stages of HD as well.
Factor-H and the local association FAHUN held a funeral for them. One of our programs, “Despedida digna” (“dignified farewell”) aims to help families bury their relatives, as many families living in poverty can’t afford to buy caskets and give them proper burials.
Darwin and Maria- you are gone to a better place now, we will miss you. Rest in peace.