I have been thinking about this post for years. And right now I am probably too overwhelmed and exhausted to do it justice. But I’m going to try anyways. Since Trey’s diagnosis, I (I won’t speak for Ry) have been in a holding pattern. We have been told that Trey likely has an attenuated (mild, aka. the brain is not affected) form of Hunter Syndrome, we have been told that he has a severe form of Hunter Syndrome. From my perspective (and I think most other parents who have kids affected by Hunter’s as well), the difference between these two forms of Hunter Syndrome is like the difference between night and day. One, you child has physical problems and differences, but is otherwise able to lead a relatively normal life (lifespan in the attenuated form varies because it depends on the degree of physical disease the boy/man has and now that ERT is available, it is expected that lifespan will increase dramatically). The other form, your child starts out and spends a few years developmentally okay, but then plateaus and begins to regress until they are in a vegetative state and pass away in their second decade of life.
For over three years, we have not known which path Trey will take. Waiting. Holding pattern. Fear. Trey is an awesome kid, is doing well, and all along I have believed in him. But when you are given this information, there is often a little reminder in the back of your mind. When Trey didn’t make it to the toilet in time, when he hit his brother, he has a great deal of energy, more than lots of other kids his age, the way he learns is just a little bit different from what is typical… is this Trey or is it severe Hunter’s? Every day, sometimes every few minutes, this question.
When Trey was first diagnosed, I taped everything I could that he did, so that if he died I would remember. Long before Sadie was born, one of my biggest fears of Trey’s brain being affected is that Avery would not remember Trey when he was this awesome, protective and helpful big brother. I spent hours writing down the things Trey did so that Avery could read it later. Once I turned that corner and began believing in Trey, I did not feel the need to do those remembering sorts of things, but I have always had that voice in the back of my head. Always. Some days much worse or better than others, but for over three years it has been there.
About 2 hours ago I got off the phone with Dr. Muenzer and his study coordinator, Heather. They had the results of Trey’s neurodevelopment tests, performed as a part of assessing whether or not Trey would be a candidate for the Intrathecal Trial happening at UNC. The IT trial involves putting a concentrated form of the enzyme people with Hunter’s are missing into the brain and is intended to help the brain and prevent and stop developmental regression in the severe form of Hunter’s. Normal development is between an IQ of 70-130. Candidates for the trial need to be between 55-70 IQ. In the past, Trey’s IQ has been within the ‘normal’ range. The last time he was assessed was May 2008. Dr, Muenzer said that this assessment would be telling. He judges that if, between age 5-6, development has not started to decline, a child with Hunter’s will remain developmentally intact. Trey turned 5 in March.
Trey’s IQ/DQ based on the tests done on Wednesday has not declined and remains within ‘normal’ range. Dr. Muenzer expects his development will be fine. He says that he does not have a crystal ball and cannot predict the future, but he does not expect Trey will ever be a candidate for the IT trial. When I went over this scenario in my mind, I imagined I’d be overwhelmed with happiness. Overwhelmed, yes. Incredibly happy, yes. What I didn’t expect is this: I have been living on hold for so long and living in fear for so long, I don’t know what to do.
I had to ask Dr. Muenzer and have started telling myself that all of Trey’s ‘differences’, like: energy, the different way he learns, sometimes waiting too long before he goes to the toilet so that he barely or almost makes it… they are all ‘normal’ kid things. I can approach them like I would any other kid. I have done this mostly, but I have not done it completely, wholeheartedly. It has always been done with fear. So I can start reading about kids in school who have high energy? I can read about all those things that people with high energy excel at over people with less energy? How easy and beautiful and wonderful is that? Really? Really?
It’s hard for me to believe. Can I finally let go of that fear? I think that to be sure, I want to have Trey’s development tested in 6-12 monthes, one last time while the IT trial is still open. To be sure. It seems a bit messed up, given the information I just received, but it also seems like a smart decision, seeing that there is a trial open for brain related problems.
It is hard to believe we are here, at this point in time. I feel like I am in one of those movies where one person is telling the other: “It’s okay… you can let go now… it’s over.”
