Hunter Syndrome

Trey's story was featured on Shaw's 'The Express' in the week leading up to the 2nd Annual Tacos for Trey. [flv width="320" height="240"]http://treypurcellcom.nationprotect.net/video/theExpressApril29_2008.flv[/flv]

The North Shore News wrote a great article about Trey and the situation in Canada with rare drugs for rare diseases. Click here to read the article. We hope to…

It is very timely that this Friday we (Canada) will be celebrating our first ever International Rare Disease Day (more about it below). This past weekend, Kirsten Harkins and Simon…

Today Trey has been on ERT for one year. We had a small party at the MDU yesterday for his 53rd infusion with cake, presents and many many thanks to…

Trey began ERT one year ago today. What a fantastic year it has been. He has not missed one infusion, which is unbelievable. He is growing like a weed and…

In disappointing, but expected news, the CDR (aka. Common Drug Review) did NOT recommend Elaprase for funding. As defined by the Canadian Agency for Drugs and Technologies in Health, on…

In my last entry I spoke about being attracted to people who are real. Well, here’s an example. This excerpt is taken from a friend of mine’s Caringbridge website. Her…

I copied the below out of the Winter issue of the Canadian MPS Society’s newsletter, The Connection: Support Patients with Rare Disorders in their Fight for Life-Saving Therapy “Canada is…

In the past weeks, we have had a bit of a rough go with adjusting to life with Sadie. Ry went back to working long film hours, often at night,…

Happy Holidays! It’s been a while since I’ve updated. Here’s what’s new: another boy started ERT for Hunter Syndrome last Wednesday at BC Children’s Hospital. I consider this big news…