James is seeing Stacey Tay from NUH as well - she is lovely. He is also a patient at the Westmead Children's Hospital in Sydney and has some amazing doctors looking after him there. We have had him on Deflazacort since he was 2, through a trial out of Westmead. We were hoping to get him on the PTC124 trial, but since he is only 4 they will not allow him to take part. This was a heartbreaking result for us, as we were hoping they could make allowances, but the criteria are very strict.
How is Jordan progressing? Still walking okay, getting around? James has been jumping and riding a bike, and swims like a fish, but we have noticed he is getting more and more tired. I am sure you can totally understand.