My two sons have DMD and are 20 and 18 years old. There is considerable variation in the progression of muscle weakness between my sons. My older son is much weaker and more affected physically. He stopped walking at age 8 and has had spinal corrective surgery at 13. My younger son stopped walking at 13 and has not had any surgery and I believe will not need spinal surgery. Having variation between siblings is not uncommon for those affected by DMD.
You have two handsome sons and I hope they are doing well. I hope research moves fast enough to help all those with DMD lead a better life.
Hi Sif, newborn screening was standard in Wales only (not all of the UK). It has recently stopped though. We'll be starting Deflazacort in Jan/Feb. Seth has deletion 45-50 so we're hopeful for exon-skipping (amongst other things hopefully too).
Welcome Sif! We hope using the community site to connect with families all over the world to share stories, news, and information about Duchenne is empowering for you and your family.
Please don't hesitate to contact us by phone, email, or message if you ever need anything -- 800-714-5437 - email@example.com
And if you haven't already, we hope you consider registering on PPMD's main website. Registering allows us to send you information tailored to parents & families of boys with Duchenne, e-newsletters, additional web-based research reports, and other information specifically targeted for members of the community.