Hunter Syndrome

This morning Trey, Avery, Sadie, my mom and I drew winners for our 'Time for a Cure' participants (www.timeforacure.ca). Read below to find out who won what: Trip to Frog's…

Today is International MPS Awareness Day. What does that mean and what can you do? Talk about MPS with anyone who will listen!! The first step in this battle with…

An article I wrote about the situation with rare diseases in Canada is in the most recent edition of BC Parent Magazine. Click here to read the article.

THE NEXT SURVIVOR SERIES Six married men will be dropped on an island with one car and 3 kids each for six weeks. Each kid will play two sports and…

Andrew McFadyen of the Isaac Foundation (www.theisaacfoundation.com) stayed with us last night while he was in town taking part in the Liberal Convention. He's running for government. What an awesome…

I often wonder how much of an effect this diagnosis has had on me. Yesterday I was sitting on the floor in our house holding my tummy due to menstrual…

I want to preface the following story with the one change I'd make if it were about my journey with Trey: I don't see Trey as having a disability. I…

The IT trial is moving ahead. I spoke with Dr. Muenzer yesterday, and he said the following information is now public info and okay to share. I wrote as quickly…

We had an appointment today to pick up Trey's new ear moulds (one blue and one green). Sara, his audiologist, also decided to do bone conduction tests to see how…

After speaking with some parents and finding out the recommendations of doctors from Shire and doctors involved with the trial, we have decided to slow Trey's Elaprase rate back down,…