Jos? was confined to the “jail” cell in his own home until right after we arrived at his home to visit. When I asked his spouse if she was still using her “jail” she said “no” but when I asked to use the restroom (to see for myself) she refused and said she needed to clean it first. She disappeared for about 10 minutes before returning with her husband all cleaned up and told me it was now okay for me to use the restroom. I could tell from the shiny padlock on the “jail” door that it had recently been used.
With no Broda chairs to use, he spent most of his time sitting up in a rickety old wooden chair. If you look close at the picture on the right you can see rope tying his legs to the chair so he won’t slip out! We provided four months worth of diapers to improve his care. On our second visit to JDA we purchsed a brand new wheel chair for him to use. Unfortunately, he was only able to used it for one year before he passed away. Because of no money he had to be burried in a borrowed grave. We aksed his widow what we cold do to help and she asked us if we could please please buy him a grave site so he could be properly burried. We were happy to do this for them.
Enor has been symptomatic for about 10 years now. He has three beatuiful daughters and one son- all at-risk for HD. We were able to purchase about eight months of the medications he was taking for his HD. Prices for all medications is very expensive and many can only be purchased on the black market. The average family in JDA survives on approximately $40/month. Not very much when you’re caring for children and also your sick spouse.
Once a proud man, El Indio used to go house to house begging for food. He stays in an abandoned home with only a borrowed mat to sleep on. We encouraged his brothers and sisters to take him back in to care for him once again. We purchased a wheel chair for him, knee pads and a padded helmet to cushion his many falls. Since his family fishes for their livelihood we purchased fish from them for our meals and also purchased electric power tools to help them be more efficient with their boat repairs.
Dr. Jorge Daza
Dr. Daza has been caring for those with HD in Barranquilla and JDA for many years. We had the priviledge of meeting him on each of our trips. We also provided himn with the latest information on HD in Spanish that we also gave to everyone else. He nicknamed me “El Guerro de EH” or the HD Warrior!