I am the mother of Nicolas who has DMD. He was diagnosed at 4 and is 11 now. I love to spend time with Nicolas!! He loves to learn and discuss anything history and science. Nicolas is just absolutely wonderful!
About my family:
I have another son, Dexter, who is 21 and healthy.
Name(s) of child(ren)/individual(s) with Duchenne:
Small world! My daughter goes to the Boulder Point rec building for gymnastics just down the road from the school. We are currently in the process of getting an appointment with Dr. Wong. We faxed over all of Ben's info this week, but I know it will be several months until we can get an appointment.
It is fantastic to hear that Nicolas will be involved with the upcoming trials!!! Ben's diagnosis has been tough on our family and it is comforting to know that researchers are working hard for a cure.
Ben's physical therapist with the Kendall County Co-op mentioned that they work with a few other boys with DMD and so far I have spoken with a family from Plano with a nine year old. We also met a few other people from a support group, but they all live closer to Chicago. Are there many more families in our area?
Which trial to choose has got to be a tough choice. But how "lucky" you guys are to have these options. You will find the right fit, perhaps if there was a little more information regarding the Prosensa trial with Dr Wong it might help sway things one direction or another. The secretness of these trials makes things difficult no doubt. Nicholas is in good hands and god willing, he will do well. Keeping fingers crossed & sending good karma for things to go easy on him.
You do not worry not to be as much time with your son, only enjoys every moment, every moment that estes with èl, we tambièn traveled to Texas in the vacations to where you go you? we go to Dallas, Tx. for the month of July, when they are the vacations in Mèxico, and thanks for acordarte of Joshua in your orations, fodder that all the mothers we prayed by each boy who this happening this terrible disease, kisses to Nicholas