December 9, 2008 mcfadyena

Full of Thanks

I was going to keep my write up about our meeting with the government short, but as I began to write, I didn’t want to stop. And now I’m on the verge of tears.
We have been trying to organize a meeting with Bob Nakagawa and Bill Mercer, the two men I was most involved with while advocating for Trey to get ERT funded in BC, for monthes now. They are busy men and we had to reschedule a number of times. We finally met today, and it was well worth the wait. It was just really neat. Bob and Bill were so warm and kind and interested. My dad talked about how devastated and devoid of hope we were when Trey was diagnosed and how we were told he would die by the time he was ten and that we should just enjoy the time we had left with him. He talked about what ERT meant for especially Ryan and I, but also our whole family. He talked about how it gave us our hope back and what that has done for us as a family.
Ryan and I talked about Trey and how well he is doing and comparatively how Trey would have been doing if he wasn’t on ERT. I am glad they were able to meet Trey. I think it is completely different reading about a disease and then meeting a child who has the disease. Trey is doing so well; he looks and acts like other kids his age. This would not be the case if ERT was not funded and Trey was not receiving weekly infusions.
On a side note, I met a mom and the hospital this past Monday who asked how often we are there. I replied that we are there weekly for Trey’s infusion and she said: “Wow. That is too much.” I guess it depends on how one looks at it. Every Monday night before I go to bed, I give thanks for Trey’s infusion and for everyone who is a part of it. I do look forward to the day that I will be trained do Trey’s infusions while we are off traveling, but until then, for Trey’s weekly infusions at BC Children’s hospital, I could not be more grateful.
I don’t want to say too much about what Bob and Bill said, because I have not asked them if it is okay, but I hope it is okay to mention one thing Bill said. Bill, who has been working in the government for 37 years, has never been asked to attend a meeting in which a family was giving thanks. In one way, Bill being in government and given the bad wrap that the government has, I can understand. On the other hand, this boggles my mind. We are so incredibly and eternally thankful, we felt we needed to meet the people who have given Trey this chance at life! I am so glad Bill and Bob took the time to meet us. The whole meeting just felt really good and I’m still feeling its effects. Today is a great day! Thank you!!


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!