December 12, 2012 mcfadyena

The Journey of Hope

This morning Trey received his fifteenth dose of intrathecal enzyme at UNC. This evening I watched a video made by the National (US) MPS Society called ‘The Journey of Hope’ that I want to share with you. Please do take 12 minutes to watch it. If you’re having a rough day and need some perspective, watch it. For me and for you and for MPS and to make our world a better place, watch it.
This holiday I am grateful for everything I have because it is a darned lot. A darned lot. Trey’s great-grandma, Omi, is in such great shape that she was able to accompany us on this month’s trip to UNC and share personally with Dr. Muenzer what a miracle this intrathecal enzyme is. A week ago I got a report  stating that Trey’s nerve conduction tests are ‘normal.’ Trey has only ever had severe carpal tunnel syndrome, he’s had two surgeries as a result, and I was told to never expect a different result. I do have a few questions before I get really excited, but I saw ‘normal’ on a test regarding my child who has a progressive disease. His disease is going backwards. Two weeks ago, Trey swam on his own, without any assistance, and this past weekend, he played goalie in his soccer game. Trey’s brain is being re-wired due to these monthly trips to UNC. I am just so grateful for life.
Happy Holidays and with much much love,
PS. That’s Trey’s Rudolph above. 🙂


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