I have one child, Billy, age 9, who was diagnosed at age 4 1/4. He has deletion of Exon 52. We are from the Pittsburgh area. I am a kitchen and bath designer for the past 18 years and have been in the interior design field for 32 years. I enjoy what I do and we also enjoy the outdoors.
About my family:
Billy is a very bright, curious, adventurous, active, fun, and funny child. He loves playing with his cars, car cruises in the summertime, hiking, Wii, DS, and looking at books. He wanted a sibling, but instead, we got him a beagle named B.B. (Billy's Beagle)
Name(s) of child(ren)/individual(s) with Duchenne:
hey terri, it is interesting that kids with the same deletion seem to have other things in common as well. your nine year old, how is he physically, we have an 1 yr old in a chair that seems to have followed the normal progression of dmd and an 8 yr old with almost no symptoms in gross motor issues, but has lots of fine motor delays, and speech delays. i find it strange how different the two boys can be with the same deletion too...
I'm not sure where Coraopolis is in regards to Doylestown, PA but please join the Group for PA Members so that we can all stay in touch. I am planning a fundraiser for October and if you are anywhere near Quakertown you are welcome to help us if you want to.