June 18, 2009 mcfadyena

Test of Metal & MPS II IT Trial

A few monthes ago, Trey’s speech and language pathologist’s husband, Salim, approached us with the idea of doing a bike race and raising money for Trey. Blown away that he would even think of the idea, we, of course, said yes. However, it is a big committment, and I never expected him to follow through with it. Well, he did. His race is this Saturday, June 20, and he has already raised over $1,300 for the MPS II Fund. If you’d like to learn more, you can go to our ‘Time for a Cure’ website: www.timeforacure.ca and click on Salim Hirji.  So, here’s to Salim and everyone who has supported him:
To everyone who participated in Salim’s ‘Test of Metal’ fundraiser, thank you so very much. As you may know, Ayasha, Salim’s wife, is Trey’s speech language pathologist. Over the past couple of years, Ayasha, Salim and our family have become close. Salim is the first person who has taken it on to do a fundraiser for the MPS II Fund, that we have not organized. I cannot describe in words what this means to us, that someone other than us cares enough to spend their time and energy on our cause. Trey. And a cure for MPS II. So, thank you Salim, for your huge and generous heart (and aching muscles!!), and thank you to everyone who has supported him. You are our family now!!
On a completely separate topic, I spoke with Dr. Muenzer’s trial coordinator for the MPS II Intrathecal trial today, Heather Priess. Next week, she will begin calling families to set up testing at UNC for Shire’s upcoming IT trial. For those of you that have been with us all along, you know that for two years, we traveled down to UNC to see Dr. Escolar for developmental testing every six monthes. The last time we went was in May 2008, when she told us the same she had been telling us for two years. Trey is within normal range for everything, although on the lower end in speech and language and fine motor skills. She said she could not give us a guarantee that his development would be fine until he turned 5. So, knowing the IT trial was coming up around the same time, we decided to travel to UNC one last time, when Trey was 5, for intrathecal trial testing. Dr. Escolar is no longer involved with the trial, but we will be going down to see Dr. Muenzer’s team at UNC, when Shire opens up the trial for development testing, probably some time this summer or early fall.


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