I'd like to share my post from 7 months ago from our Facebook page - https://facebook.com/Duchenneroadmap
June 8, 2013
Right now on this quiet, easy Saturday morning, I'm listening to Noah play with his toys on his train table. He sounds like any other 4 year old boy, making up an imaginative story about constructing a new airport and acting it out with the various vehicles. I can almost forget... Almost forget that ten days ago our life was changed forever.
Imagine finding out that your son will soon lose his ability to walk, to climb stairs, to get up from playing on the floor. Imagine that he will also lose his ability to brush his teeth, get dressed and even hug you. Imagine that he will lose his ability to breathe on his own. Imagine that one day his heart will not have the strength left to beat, and you will lose him.
For 10 days, we have been trying to come to grips knowing this may be the future for Noah, and everyday our hearts are beaten and bruised knowing what DMD will do to our sweet, happy child, and to our family who love him so much.
Our son is now 5 years old... Time keeps marching on - time is not on our side. Please support treatments that will help our boys, so that they can keep on playing.