September 12, 2011 mcfadyena

Off to UNC for October

Well, we have dates. I’m still blown away by the fact that Trey qualified for the IT trial. We knew about the possibility of this trial upon Trey’s diagnosis and since we realized Trey’s brain is affected last summer, have been doing everything we can to get him into it. Getting into this trial has been on our shoulders and minds for a long long time. It is still surreal. And really puts everything else into perspective. Trey will have his port placed on October 7 and he will have his first infusion on October 18. Then he will have monthly IT infusions, hopefully forever, or until a cure comes along (this being a trial, nothing is assured, but the drug is doing such wonderful things for our boys, it’s looking good). There it is. It’s not real yet, but it’s getting closer. What a wonderful world!
Trey is about to join the group of boys in this photo! All of them have Hunter’s and in addition to getting their weekly IV enzyme replacement therapy or ERT, they are all enrolled in the IT trial (from L-R: Case, Easton & Elijah) putting monthly enzyme into their central nervous systems.


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