Hunter Syndrome 28 Sep 2006 Osteopath Appointment We had our first appointment with Caroline Abrams, an Osteopath, today. It was very interesting for me because until recently I had never even heard of Osteopathy. I still don’t… mcfadyena
Hunter Syndrome 27 Sep 2006 Busy Day So we had a really busy day today. In the morning we saw our ENT, Paul Moxham, who didn’t stop making my dad laugh for the entire appointment. He’s really… mcfadyena
Hunter Syndrome 21 Sep 2006 Hospital Wants to Help We received a bit more news from the hospital. After another meeting with the hospital administration, and a whole bunch of advocacy from a few doctors who really want to… mcfadyena
Hunter Syndrome 20 Sep 2006 Hospital Won't Fund ERT We’ve received a bit of new information. The hospital has tentatively said no to funding Trey’s ERT. We’ll get final confirmation today, but from the doctors I have talked to,… mcfadyena
Hunter Syndrome 11 Sep 2006 Orphan Drug Policy and Family Update We had an appointment with our specialist, Dr. Stockler, today. We think she's awesome and are so glad it's her who we meet with on a regular basis. We talked… mcfadyena
Hunter Syndrome 10 Sep 2006 BC Children's Hospital declined funding BC Children’s Hospital has declined the request to fund ERT for Trey. They argue that there is not enough evidence that Elaprase (the ERT for Trey) will work, and that… mcfadyena
Hunter Syndrome 09 Sep 2006 Where We Are at Today Where to begin... Pretty much has soon as we found out Trey had Hunter's, we found out that there was no treatment available yet, but that there probably would be… mcfadyena
