What we’re up to… October 25, 2024 at 10:00AM

On this day eight years ago, 25.10.2016. Oh this day. This day they wheeled my baby down to the OR and took a chunk out of his leg (read: skin and muscle biopsy to see if it would help explain the previously unexplained hypotonia, his floppiness). They didn’t really need to do this, because at this point they had a good idea (though unconfirmed by genetics) that Kai had NKH.

While I’m sad that it happened unnecessarily (Kai had a scar his entire life) I’m not sad that it was, many years later, given to UCL at our request so they could build iPS cells (Induced pluripotent stem cells), which were then used to grow other cell models in NKH research, helping move research forward to an effective treatment.

It brings me comfort somewhat to think that potentially, his cells live on, continuously generated in a lab for cell modelling, even if he doesn’t.

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