After all the excitement of meeting Van Hove, it turns out that the researcher we support through Josephs Goal, Prof. Nick Greene’s lab is right next to our children’s specialist hospital. In fact, Prof. Nick was apparently chatting to our metabolic consultant, having met at Van Hoves research presentation.
Prof. Nick reached out and suggested next time we were up that way that we meet to hear about how the research was doing, so the very next day we got some face to face time with Prof. Nick!!
How lucky are we, to be in the right place at the right time to be able to meet two of the three researchers working on NKH treatments?!
Prof. Nick is lovely man, smart, relaxed, hopeful. It was much easier to talk to him than it was our metabolic consultant or even Van Hove. I suspect it’s because he’s not a consultant, he’s not managing hospital protocol or our expectations. He was just a normal guy without all the patient/doctor barriers that come between you and your typical health professional.
It was refreshing. Considering how many medical professionals we have in our lives, and how many aren’t able to speak freely, this interaction was refreshing.
Again, so much of his work is unpublished so I can’t and won’t share anything here, but oh my days the hope. If I took the wrong approach with Van Hove and all my questions, I was wide open with Dr Nick Greene. And just, there was so much information, so much going on, so much that was happening.
There are huge, giant strides happening in the world of NKH research. Huge, giant *leaps* forward.
It gives me hope that soon, if all goes well, we may have a future with Kai. So, we fundraise. Because that’s the biggest barrier at this point. Funding the research is by far the biggest barrier we have between my baby and a future. Sometimes, if I’m having a low day, I’ll imagine what it might be like. To not worry that this moment might be our last with Kai. To be able to relax in with him.
So much hope, hey.
