I don’t know where to start. Last week I got wind that Dr Van Hove – an NKH researcher who has spent the last ten years looking at NKH, who has seen a number for NKH children, whose work has laid the foundation so other NKH researchers aren’t starting from scratch – was in London on a three day whirlwind visit.
I found out the day he landed, but with a frenzied amount of emailing Dr Van Hove graciously carved out half an hour of his time on his final day for us.
This felt momentous – I have spent the last six months on a crash course into the world of metabolic biochemistry and genetics. My knowledge is rough, but I have read an inordinate number of research papers by Van Hove.
On the day I was nervous. Excited. I wasn’t quite sure what I was expecting, but I had a long list of questions and was hopeful about learning a bit more from someone who would know. Finally! Someone who had answers!
Van Hove is a very softly spoken, genuine, and very very clever man. A man of science, I’d say. He looked Kai over, and was very polite and he listened to my questions.
Well, my long list was a complete sham. I’d gone in with the wrong approach. I was asking questions like ‘would x help Kai’s brain development’ or ‘would x help the seizures’. I was asking because I couldn’t find anything myself. I was asking because I was hoping finally, someone would be able to tell me.
I was a bit of a fool. On my very first question Van Hove very gently, and very kindly reminded that there was very little evidence for how things work with NKH. The more we talked, the more clear it became – there are a lot of good hypothesis. But there is very little evidence, and there is very little evidence because there is very little research. There is very little research, because there is very little funding.
I, just, I can’t even begin to explain how deflated I was. I had the time with the person who has spent over ten years looking at NKH, probably the closest to an expert as I could get, and still… I was relearning what I already knew. NKH is so rare, we don’t have millions funnelling into research. Our experts eek it out on grants and what small amounts families can provide. There is no evidence, because there is not enough research.
I gave up my list at that point. Van Hove did have a lot of interesting things to say, lots of new to me things, about growth and formation. About the research he’s doing, about chaperone therapy and his hopes for the future.
I won’t go into detail, because his current research is currently unpublished, but I’m hopeful. It was such a privilege to spend time with him. I have hope in his research. I have hope that the foundation learning he is doing will propel other researchers forward towards a cure. I have hope that he will find the right compound, for the right protein, for the right mutation. I have hope in him, because without him Kai, Sam and I have a very bleak future ahead.
Again, we place our trust in the research. We fundraise. We hope. There’s nothing else we can do.