My story is similar to that of any mother of a child with Duchenne muscular dystrophy. Any family member of a child with any type of disability can understand the pain that lies beneath our skin and the frustration for not having the solution in our hands. Duchenne is a cruel diagnosis because contrary to other disorders that might improve with time and treatment, DMD progresses quickly and there is no cure for it. So, we are literally in a fight against time.
My little precious boy was diagnosed with Duchenne at the age of 5 after many visits to different specialists because I knew that “something was wrong”. All doctors kept telling me that everything “was fine”, to give him time to “walk normal”, and that he was probably just “lazy”. Some doctors even told me that I could schedule a follow up visit in the future if I wanted, but that they did not consider it necessary. I had done extensive research online but never found anything that could explain why my son walked and ran “funny”. Duchenne is a rare disease, and even doctors need to learn more about it, so they can make an early diagnosis and help improve the quality of life of DMD patients and their families. It wasn’t until a neurologist evaluated my son that I heard the word Duchenne for the first time. I did not know what muscular dystrophy was. However, the diagnosis was not the worse part; the most horrible moment of my life was when I heard that it was “progressive”, “fatal”, and that there was “no cure” for it. What were my chances? How could there be nothing to do about it? How was that happening if there was no history of Duchenne in my family? So many questions… so many of them still unanswered.
Needles to mention that my world changed and that I myself changed as a person. People look at me, and they cannot understand how I can still smile. I am frequently asked the question “how can you be so strong?” Well, that is why I previously said that my story is similar to many others; because being strong, more than a choice is the only path to follow by a mother who wants to save her son. My child needs me happy; he needs me strong and, ironically, he is the one who teaches me a lesson of joy and courage every day. I love you Alex! I loved you since before I met you, and I promised you since you were in my belly that I would always care and fight for you. You are a gift from God. I died the day I learned about your diagnosis, but your smile and innocence revived me. I can feel my blood boiling in my frozen veins because my love for you is powerful, and it makes me want to overcome the biggest obstacle, even if it’s a monster called Duchenne. For you, son, I will walk! I will walk tirelessly to find the cure so that you can walk too. And we are not alone, because with us, there are wonderful people “Walking to End Duchenne”.

  • Published: 8 years ago on May 1, 2016
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  • Last Modified: May 1, 2016 @ 10:30 pm
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