July 9, 2013 mcfadyena

First intrathecal dose on Canadian soil

Easton, Trey & CaseWe have been traveling to North Carolina monthly for 22 doses. On Monday, July 22, Trey will receive his 23rd intrathecal dose as part of the MPS II clinical intrathecal trial under Dr. Joseph Muenzer at UNC, at BC Children’s Hospital. This is wonderful news. While everything pales in comparison to how AMAZING this drug is, the strain and stress this trial has put on our family is immeasurable. I do believe we are stronger for it, but we are relieved to no longer have to travel to UNC for monthly doses. We will still travel to UNC every six months for tests and placement of a port that is expected to be approved within the next month or so, but that is peanuts! We’ll also be glad to continue to visit a place that has become a second home and people who have become a second family (see above: Easton and Case are in the intrathecal trial with Trey).
Trey is the only Canadian enrolled in the Phase I/II trial and this will mark the first time this drug has crossed onto Canadian soil. Dr. Muenzer will be flying up for Trey’s first dose. Phase II/III is slated to begin in September of this year.


We want to hear from you! Send us your story so we can share it with the world. Every person and family battling Hunter Syndrome has a unique story to tell - one of bravery, resilience, and perseverance. We'll share all stories online here and on our social media feeds!