Hi, I read your post about not being able to find out your son's mutation or deletion. We are in the same situation. My son is 18 and has had 3 DNA tests and they have not found anything yet. Since I have no family history of this in my family I don't know if we will ever know. The genetic counselor I spoke with at Duchenne Connect and our Neuro say that there is a possibility that we may never find out. Our neuro and the genetic counselor are in touch and looking at the available options and at this point what our insurance will cover. We will see. I have two daughters who are aware of the possibility of their being carriers and a sister who has factored that into her decision not to have any children. It is hard.
Hello. Thanks for saying hi, finding this community has brought me some relief. I am already setting up appointments for my son to go to Dr. Wong in Cincinnati because of this community. This is the best information I have been able to find. Your pictures are lovely and how wonderful you were able to find a way to work at home. I am sorry your company was not supportive. I will look forward to visiting with you. I was in London a year ago January, it was my first trip there. I enjoyed it very much.
Hello Johanna - i would definitely recommend the site to your mum. I have been very busy lately with one thing or another and I myself haven't had much opportunity to read through the pages or talk to anybody! Hopefully after next week i'll have more time, and perhaps soon will be chatting to your family!! Love to Archie, take care, Jane
What a doll?!!!! Great picture of Johanna. I plan to write you more because I need to finish dinner but I wanted to let you know you truly do have a friend. I will help answer any questions or concerns. I feel so lucky Daniel has made it to 22 and living in an independent apartment setting. I promise to write more soon. Please email any questions or comments. Fondly, Carol
We're actually in Beckenham, Kent, about 10 minutes west of Bromley. Nice suburb and close to London, which I love since we're only here for 2 years or so. We have a lovely big house with a huge backyard (well, huge by singapore and Tokyo standards) and just recently bought a chocolate labrador puppy! We have been promising the kids a puppy for a few years, and finally decided the time was right.