Trey’s ERT is funded!! I spoke with Bob Nakagawa today and he was pleased to tell us that our government, through BCCH, will pay for Trey’s ERT. This is a huge step for our government and we are so thrilled.
However, we cannot begin ERT until we choose which form of therapy Trey will get: CBT or ERT. ERT is much much much less risky form of treatment and works wonders on the body, but does not help the brain. If we chose the ERT route for Trey, he would get an ERT infusion once a week at BCCH (it’s an all day procedure).
CBT is very risky (the mortality rate is 15-20%) and has not been proven effective as it is too new and soon to tell (the first CBT done on a child with Hunter Syndrome was 4 years ago). However, it has the possibility of helping the brain. It could be the breakthrough Hunter Syndrome is looking for, or it could not.
For now we’re in a bit of a waiting place, which I’m not fond of, but at this point, it’s what we’ve got to do. We are waiting because the doctors have recommended it and when it comes down to it, we don’t want to take the risk of our child dying if we don’t have to. However, we want to make sure that if we do wait, the chances are likely that we will have different results in 3 months than we have right now, for two reasons: one, the chances of CBT working for Trey are better the younger he is, and two, ERT has been approved, and again, the sooner we begin, the better.
And on a different note, we are home from our trip. We have spent the last fews days with the McFadyen’s at their home in Campbellford. They live in a beautiful house in the country. Nothing like our home in the city, and just perfect for a little R&R. It was fun and relaxing and awesome. We slept, visited, drank, ate, talked about fundraisers, talked about MPS, and talked a lot about the decisions in front of us.
Although they don’t have to make decisions regarding brain involvement for Isaac because MPS VI rarely affects the brain, while they were going through diagnosis, they spent some time believing Isaac had MPS I and therefore they were faced with thoughts of transplant. And it seems that anytime a family has been faced with MPS or other life threatening diseases and situations with their children, these parents know exactly what it’s like to think about their child’s mortality. So they were a nice sounding board and a compassionate and understanding ear. Another great part of the trip were the kids. Isaac, Trey, Gabriel and Avery got along well and had such a blast playing. They were wired and happy from dawn till dusk.
In terms of appointments, next week we see our Homeopath, Naturopath, Osteopath, ENT, and Hematologist. We’re looking forward to seeing our ENT as we’d like to get Trey’s tube surgery appointment moved up as much as we can. Right now our appointment is on November 29, and we’re hoping Dr. Moxham can get it done sooner. After Trey’s ENT appointment we are meeting with Jayne from the BCCH Foundation. She has organized a photo shoot for Trey, so that they can put pictures of Trey in their magazine, on their website etc. They’d like to be able to add pictures to his story since we’re now telling Trey’s story as a part of helping the Foundation raise money (like we told Trey’s story on the Silk FM Radiothon in Kelowna). We’re also looking forward to meeting our Hemoatologist, Dr. Schulz, as we’ve never met him before, and he’s the transplant doctor we’ll be talking to at BCCH. We want to find out what he has to say about transplant and we also want to talk to him about how a transplant could possibly get funded if we did it at Duke.