"Billy, age 11, is in public school and we haven't had too many serious issues with taunting etc.....our district does have a rigorous anti-bully policy and bullying is not tolerated at all. On occasion when taunting or bullying has…"
My son Billy, age 11 1/2 today, is finishing 5th grade this week....he transitioned from elementary to middle school this year. We have also been getting a 2nd set of textbooks to keep at home....Billy is still walking but has been…"
Unfortunately, that was not me at the conference (stuck here doing minor house renos).
I did get to listen to some by live feed while I varnished furniture outside.
But the same does hold true for the trial we will be taking part in,…"
My son Billy, recently age 9, is a toe walker for approx. 3 years now. He is doing quite well--yesterday had his cast removed from arm from a recent fall...very minor fracture...the orthopedic surgeon could not believe he was a Duchenne boy (deletion exon 52) and commented that he looked "spectacular" when he first saw him 3 weeks ago for initial appt. We talked a bit yesterday at cast removal appt. and I inquired of his knowledge with Duchenne..turns out he had a cousin with Duchenne... so…See More
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.