2003 signaled the end of one era and the beginning of another. From now on, news of friends receiving ERT would begin to come thick and fast - every one of them a cause for rejoicing.
It would take until 29 March 2006 (Europe) and 28 April 2006 (USA) before the formal approval of Myozyme as a treatment. However even that was not the end of the road - there are still issues around funding and, above all, ERT is a treatment, not a cure.
The fight goes on, carried out by an international community of patients, scientists, doctors and companies. I hope that others will contribute the rest of the story here.
I myself 'retired' from the Pompe scene at the end of 2003. It had been 10 years since Calum died and my dream of seeing an effective treatment for Pompe disease had come true. We wanted to remember our son for his short, but wonderful, time with us and not for his disease. There were other people better suited than I to do my remaining jobs. It was time to move on.