My oldest son, my Alejandro, is going to turn 17 and has Duchenne muscular dystrophy. He was diagnosed with this disease at 9 years of age in a children’s hospital. The neurologist, for what, treated us very well, explained what it was, that it was a type of dystrophy that was moving very fast and that there was no cure, that nothing could be done. They even told me that it was best to let him die in peace, I understand that trying to prepare for the worst, but for us was painful, especially because we were just starting in this disease of my Alejandrito.
Well, so as a family we started to investigate everything we could on the subject, mostly on the Internet because there is very little that is known about the disease and what we realized is that we had to accept the new reality of our family and together we do everything to make our son’s life as good as possible.
“Always as a family, always united”
Life never stops giving surprises and so a few years ago we found out that my wife was pregnant again. A second blessing and a second challenge, because my Isaac, who is about to turn 9 in November, has already been diagnosed with the same disease. But that is nothing that scares us or hurt us, because with the experience of what we have lived with Alejandro, we are more prepared and just keep going, always as a family, always united.
It’s nice to see how they treat everyone with affection and let us be part of the therapy, it’s wonderful. Since we came here to the Triada Foundation, about two years ago, I can see the progress of my little ones because apart from the therapies that they give here, they teach us the exercises that must be done to continue the treatment from home and see,
Canaleta para Boccia, made by Don Wilmer
Now my Alejandro even competes and wins in the game of Boccia with a channel that I made myself taking out the best of 5 different designs that got me his trainer, John.
I’m glad to see that people are slowly opening their minds and realizing that there are different stories in life. For example, when we were just starting to walk my Alejandro around the neighborhood, I thought that he was the only person in that condition because he did not see anyone else in a wheelchair and apart they all looked at us weird; but with time more and more I began to see other families with someone in that situation and I realized that maybe it was to avoid the looks of the rest that did not take them out. As you can see, Alejandro not only changed my world, but he is also helping others in their own way.
I want to ask all the people who are now knowing our history, to support as they can, not to turn their back on people who have different lives and even give a smile to a person who is in a hard situation, help a lot.