Hello everyone, my name is Eddy Santos, my wife is Rosalinda Illescas, and my only son is Ángel, who greets you from Guatemala, I want to share in a very brief way a bit of the history of this Warrior of Light, Angel has 8 years old, he fulfilled them in November of last year, from the age of 3 we noticed that it was very difficult to jump, run, and climb scales, not crawling, from 4 years, our pediatrics told us that his problem was flat feet , But when he was 6 years old, he was diagnosed with Duchenne Muscular Dystrophy. From there, everything changed in my family, it was a devastating blow, which to this day we still feel it, but it also united us more as a family, and we Has made it possible to meet wonderful people who are admirable in their struggle to overcome this disease, but we have also felt the sadness when one of the Warriors has advanced us, because we think of our children, and the pain that causes the family is lost irreplaceable.

My son did 2 genetic tests, the first one was DELECION DEL EXON 58, the second, which we did recently in October last year in Los Angeles California, my son was diagnosed with NONSENSE type of mutation in exon 58, for Whose Duchenne type already exists a medicine that can help minimize and prevent the progression of the disease, the drug is called TRANSLARNA (Atularen) in use already in the United Kingdom, Italy, Belgium, and in Latin America is currently distributed and sold in Colombia, but when I check the price this is really too high for what I can afford and I have, which limits us as a family to access it, and in my country, unfortunately, insurance companies do not cover genetic diseases, and on the other Side of the State or Social Security, do not provide this coverage, so I feel desperate, and frustrated, because I know there is something that can help make my son's life happier, but I can not give it to him, it's very very Painful all this.

We would appreciate it very much with my family, if you can advise and guide me as I can help my son, I have my savings of more than 20 years of work, however, this would not cover me even the first 2 months of treatment, Your best ideas and God Bless you and your families.

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