Hello, my son Giancarlo 7' was recently diagnosed 4 days ago with DMD ...

Just wanted to share with the community and I had my first MDA counseling meeting today, I was given a lot of information, any advice for this new change in our family?

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Comment by mariela pedroza on November 5, 2009 at 8:09pm
Thank you so much for your comment, if anything I can help please also let me know, last five days I have done a lot of research, really anything I can help, I'm in Fullerton/Anaheim Ca just a few minutes from Disneyland!! just wanted to bring that up :) many blessings for your family!
Comment by Cori on November 5, 2009 at 3:27pm
Mariela,

I am sorry to hear that you are with us now...although painful and devastating at first, and you feel very alone, know that it does get easier, their is some relief in knowing what is going on with your child and being able to understand them a bit better.

Our son was just thought to be diagnosed about 2 months ago and we got the official word from the genetic result about a month ago at the tender age of 5. Just remember that your son knows know differently, he is and feels the same as he did before the diagnosis. Although the diagnosis is horrifying at times, it has made our relationship better with our little guy and his behavior has changed dramatically for the positive. To be honest with you we would take him outside to play soccer, or run around and sometimes (many times) he flat out refused. We would in turn get very fustrated with him because we thought he was just being lazy. Same goes for always wanting to be in the cart or pushed in the stroller...we understand now why he does the things he does. Or previously taking FOREVER to get into the car, now we understand. With that understanding we are now able to help him and although we don't know what he feels like we can do what we can to help him more and get him all the help he needs.

I pray that with this unfortunate disorder comes a new understanding of your children as it has for us, we no longer FORCE Trey to run, if he wants to great, if not, we understand, it is not that he is 'lazy' as we thought before. Know that the support here is tremendous and no question is stupid, and although you may relate to Giancarlo differently now, he is the same little boy, and before you know it you will have a new understanding of him, but honestly admist all the doctors appointments and extra help you will now receive (therapy, etc) life will basically remain the same and changes will be slow...

Our heart is with your family! Cori

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