January 10, 2012 mcfadyena

Never Gets Old

Summer 2006Just before his third birthday, after six monthes of fighting with the BC government, Trey became the first person in Canada to be approved for Elaprase, a life-saving IV Enzyme Replacement Therapy. This past August Trey qualified, after years of waiting, for a life-saving IT Enzyme Replacement Therapy trial at UNC. He had his third monthly IT dose of Elaprase this morning. White count less than one. 30 more mg of enzyme floating around in Trey’s brain.
The gratitude never gets old. I have had to fight and advocate and wait for every treatment Trey’s received. To date, even when Trey’s had the flu and not been able to get his IV Elaprase doses on time (you can’t get your infusions when sick, as that increases the chance of reaction), I’ve made them up, doing infusions every five or six days until he’s back on track with his weekly treatment. Trey’s missing an enzyme. I’m not going to give up on any chance to get that enzyme into his body.
Now it’s the IT drug. After years of waiting, hearing about the possibility of an intrathecal trial, but not knowing if it would come to fruition, and then for Trey to actually be cognitively intact enough to qualify for the trial once it began, I am still blown away. Although the details of flying across the continent for 19 hours, missing connecting flights, leaving young children at home for ten days a month, Trey getting too many needles each month to count and now too many general anesthetics in his life to count, are not ‘easy’ realities to manage, they are small potatoes in the bigger picture.
Last night I lay in bed and could not sleep. Because I continue to be amazed by this chance we have. This past Saturday, Sadie saw a picture on our wall I’d just hung. It was me, holding a boy, dancing. She asked who the boy in the picture was. She said: ‘I know that’s you (pointing to me), but who’s that (pointing to the boy)?’ It was a photo of Trey and I, pictured above, taken a few monthes before Trey started IV Elaprase. His features and body have changed so much as a result of his weekly treatment, his sister doesn’t even recognize who that little boy was, before he started a therapy that would save his life.
When Trey started IV Elaprase, no one knew exactly what it would do for him. No one knew that five years later, his sister wouldn’t even recognize old pictures of him. Now we have this same chance with IT Elaprase. Gratitude doesn’t even begin to scratch the surface…


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