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XIMENA 's Page

Profile Information

About me:
Mother of 2 boys (5 years and 3 months) I'm original from Ecuador . Trying my best to comunicate in english
About my family:
We live in New Jersey my older son was diagnosed with DMD on august 2012. We are waiting for the baby to be diagnose ... the worst thing is been pregnant and the doctor tells your son is with MD and your baby could be too ;(.My husband (father of the baby) is our angel without him I don't know what could I had been done..
Name(s) of child(ren)/individual(s) with Duchenne:
Age(s) of child(ren)/individual(s) with Duchenne:

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At 12:32pm on July 30, 2013, Guillermo Rivera said…


My youngest son James was diagnosed when he was five. He is 12 now although he uses a wheel chair for long walks he still gets around on his own for short distances. Every year we go to Cincinnati Children's Hospital for evaluation and treatment recommendations. One thing we did with James is we started him on Deflazacort, vitamins, D & B also, COQ10. It is a very difficult thing to find out, and yes we shed many tears. Life as we knew it, stopped when James was diagnosed, but we have also learned to embrace James as for the gift that he is. We have two boys, James who is 12 and Peter who is 19 (Peter does not have MD) and is a devoted brother. Over the years, I have learned to cope with the MD in our lives through the realization that I have  a choice, fall back and allow the overwhelming sadness drive my life, or should I do all we can to keep James as healthy as possible. And the realization that no matter what, James will know without a doubt that he is loved and the world is brighter for him in it. Slowly, very slowly, one begins to emerge from the fog of despair and in doing that, one finds what we found, HOPE. Keep your faith, stay supportive of each other, and most important do all you can to keep your children happy and safe in the knowledge that they are loved. Mantenga su fe!


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