Ry’s mum passed away yesterday, so we are filled with grief. I’m not going to go into more because it’s Ry’s mum and not my place. However, I got home from the hospital to an email from Dr. Muenzer asking to call me this morning, which of course I was thrilled to have! We discussed a number of things, but I’ll only mention a few newsworthy bits here. The first boy in the 2nd cohort of the IT trial was sick for his scheduled device implantation surgery, so that was re0scheduled. My biggest question for Dr. Muenzer around that was pertaining to our trip. Because there are so many strict timelines within this trial, I wanted to know if the port implantation postponement would push our trip. Dr. Muenzer had good news, it did not. We will be in North Carolina for final trial assessment from June 26-July 2. The LP, the big ‘in or out’ test, is on Canada Day (for you Yankee’s, that’s July 1).
I also got other great news about Trey’s eyes. He will not go blind. I imagine it’s lack of knowledge about MPS & how that affects the eyes, but the opthalmologist Tuesday told me that first Trey’s night vision would be affected, then his peripheral vision, then his central vision. Given what was going on with Ry’s mum and with my hopes for this IT trial (that it will work miracles and maybe even help Trey’s eyes), I’d pushed this awful news out of my mind, as far as it could go, but Dr. Muenzer’s news was SO great to hear. The way he told it to me, the retina has rods & cones. Cones are responsible for colour vision and rods are responsible for night & peripheral vision. Only the rods in Hunter Syndrome are affected. Dr. Muenzer said that in adults with MPS II, they may have trouble with night vision and driving, for example, but they do not go blind. Phew. Wish doctors giving such crucial information and bad news would do their research before freaking parents out.