Life in Washington DC sometimes shields you from what's going on with the rest of your family. I had not traveled to my native El Salvador for over 7 years! It was time to go visit my relatives.
This past December I decided to travel to my native El Salvador to visit my grandmother. When I arrived I was told my uncle had fathered a son who was born with Duchenne but the two had separated but now were living together. I immediately traveled to a small and poor city in the state of La Libertad to meet him. There I met Kevin, who is now 11 years old and living with Duchenne. Kevin is a very funny kid who likes to play footbal and walk in the local park with his friends. Currently he is ambulatory, able to walk without assistance, but his gait was not normal, had difficulty walking and may need to be in a wheelchair very soon.
Life in El Salvador for a kid with Duchenne is a lot more difficult than most people would ever imagine. His family does a great deal of work and effort to make sure he is safe and healthy, but access to proper care in El Salvador is non-existent. I found out through research that Kevin should had been put in steroid therapy a long time ago, or before he started showing symptoms of muscle wasting. Unfortunately, his parents didn't have the resources or the proper access to care.
I spent a great deal of time with Kevin, we played football, took him to see a fireworks show and we went to swim at a local public pool. Kevin is a very sweet boy who deserves to have proper care and better quality of life.
I returned with a mission. I will do whatever is necessary to be able to provide proper care, medicine, and a better overall quality of life for Kevin and his family.
I joined this community as the first step to get myself surrounded with people in similar circumstances. I hope to learn as much as possible and educate myself on what is the right thing to do for Kevin.