Good night dear, I thank you for accepting me as first member of his organization, and already have my commitment to help in any way I possibly can to all community members; The November 10, 2014, last year, I got a grim and sad news for my wife and myself, my son suffers from Duchenne Muscular Dystrophy, from there, it was difficult to accept this diagnosis, but little We just tried to cope, especially holding hands and will of our Heavenly Father, and the Virgin Mary, praying for help and heal my son, likewise, enlighten and regale the wisdom and resources to everyone and institutions that are working every day to find a cure to help all children, youth and adults, and families go through this heavenly plan that God has not chosen to perform. From diagnosis which was ised by neurologist Ruben Posadas, we started with 0.5 milligrams of Meticorten supply daily, as well as 2 tablets of enzyme Q 10 50 mg, one in the morning and one in the afternoon; Likewise, thanks to technology I have supported much of the product in the country of Spain where I have obtained information of treatments, because in my country Guatemala, there is no instutucion or community that can guide and monitor the progress of those suffering from DMD ,
so now we take it once a week with physiotherapy, 4 times a week will perform the exercises at home, likewise, took him to the Saturday swimming an hour, and God willing next month two hours, likewise Yesterday I started to use their splints, all this because my wife and I work to give our son what our power to provide the best quality of life that God forbid.
With the help of my wife, we request genetic testing in a laboratory in order to confirm the disease Duchenne my son, as the opinion was only clinical, whose test he underwent at the end of July 2015, this test was practiced by the method MLPA held in Mexico, receiving two days ago, the sad news of the confirmation of Duchenne, resulting in deletion EXON 58, enclose a copy of the result, my application and support I ask you, is that they can review what we are doing with our son, if we are doing well, and if I can advise to improve it, likewise, derived from the result, if there is any medical possibility that allows me to help slow the disease, as he is comment on my only son, now my wife is 48, and I will fulfill 44 years, so I feel like you will understand profoundly sad,As our faith that keeps us motivated to continue, and with the certainty that God, my Father Creator, who loves children, enlighten me find the way and the people that their generosity, kindness and love, to support me to find the best options to help my son, of course thank you very much for any advice, guidance and help you can provide me. blessings