Juan Hernandez describes how tough day-to-day life had become for him and how he was unable to find a way to help with the various health problems his children faced.
As a parent, I felt so useless because I wasn’t able to help my children, to a point where I felt like I had no type or form of joy in my life until a bright ray of hope for our family peered through the cracks of what seemed like an endless tunnel.
My oldest son, Linton, was just 12 years old when he began to deteriorate rapidly. It was like he was losing control of his body. Something was very wrong with his legs. We visited multiple doctors in the area and the town nearby, which had very little resources. No one there was able to diagnose Linton. It turns out his condition is very uncommon and none of the doctors we saw had ever seen it. The stress in our family reached a new high when we found out that our daughter, too, suffered from the same condition. Even then, there still wasn’t a diagnosis, there were just hunches and suspicions. The doctors recommended that they be seen by specialists that we could not afford. We could not afford the trip to see these specialists! We could not afford the costs of consulting with these specialists, either, let alone paying for lab work, imaging, and medications. We genuinely believed we were finished and all we had to do was accept our fate and prepare ourselves to see our children depart this world far before their time.
On a rainy day, one of many we experience here in the Cangrejal Valley, a representative of the Un Mundo organization came to invite me to become part of a special program of education and wellbeing, since they had heard about our struggles and our kids’ deteriorating health. They explained to me the kind of work that they did and how the life of my children could improve significantly. It was that rainy day when I decided to join this wonderful and bighearted program.
Shortly after enrolling in the program, my son Linton and his sister were given a thorough medical evaluation with a pediatric neurologist. He told us they suffered from a congenital hereditary degenerative disease known as Charcot-Marie-Tooth disease. That strange and long name, impossible to pronounce in my native language, told me nothing. All I knew was that it was slowly sucking the life out of my young children and, we wanted to find a way to prevent it from doing so, and we wanted it fast. We wanted to see them healthy, happy and full of hope just like other children are at that age.
The specialists did tell me that the disease was not reversible, but thanks to the support of those specialists, of the volunteers in the special education and health program in the community, and of every one who has supported and continues to support Un Mundo, my son Linton and his sister Denia have become stable; they have not gotten any worse. I am grateful for everyone and God for the fact that today my son is able to help me with ours crops, and most importantly, he feels like he is useful and contributes to our family’s wellbeing. My daughter Denia, whose health deteriorated far worse and much faster than Linton, has been stable and enjoys spending time together as a family.
Since we have very few resources, we have no way of repaying Un Mundo. We know that they don’t charge for what they do and that they do it out of genuine interest in helping out the community, but we know that there are parents out there who have suffered and or continue to suffer the way we did. My wife is now a part of the board of directors of the Association of Parents of Disabled Children, formed to better support one another in different ways to help our children, whom the world has greeted with more challenges. We are all a community, we are all Un Mundo (One World).