Wednesday, April 13, 2011

Surgery is Set


March 7, 2011
Due to the fact that I have yet to hear from BioMarin, I suspect that the Phase III Enzyme Replacement Treatment wont be happening anytime soon. It's getting harder and harder for Trey to walk and such a tight space in between his knees. Because I really don't know what to do and the FDA doesn't seem to work at lightening speed, I've decided to make the appointment for Trey's knee surgery for the end of June. So although the qualifications for being included in the Phase III study say that the patient may not have had any surgeries 3 months prior to beginning ERT I have made the appointment anyway Trey's 8-plate knee surgery is scheduled for June 28 in Minnesota. My thinking is that if ERT is announced before then we can always cancel the surgery. For now we are on the schedule and if by just plane bad luck that the treatment comes within those 3 months after Trey's surgery and he gets disqualified to be a participant, than that is a decision we will have to live with.

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