"It's really sad to know that the hard work of boys and families went in vain. I don't know when will our boys get a treatment option. Years and years passing by, billions and billions are spent but no treatment so far!"
Hi Shelley, your genetic test is the next step and your local clinical will no doubt register you on our national registry: https://nmdregistry.com.au/dmd/ But meanwhile, if you don't have our Teacher's Pack or New DX pack, email me some contact details and we can mail them and you will get newsletters very occasionally from Duchenne Foundation about opportunities. We also send out emergency wallet cards like PPMD's and encourage folks to add the information into their child's eHealth profile online. With pending approvals for treatments for approx 26% of kids, it is important to find out the mutation so that will be interesting. Connect up soon? Best regards.
I didn't think we had any families left in or around Darwin as the ones I used to know had moved. Please get in touch email@example.com and I can give you a call? Are you on our mail list? Best, Deb