What we’re up to… June 10, 2024 at 07:46PM

By 10th June 2024 No Comments

I got to meet this sweet boy in May, when I visited Wales for the skydive. This is Jace, he’s only six months younger than Mikaere is and oh my absolute heart it was a pleasure to meet this little guy. First off, he’s pretty hilarious. He’s nonverbal (like Mikaere) but is able to tell you pretty clearly what he likes and what he doesn’t (I brought a few toys for him which he wasn’t interested in at all, but he was pretty keen on his Dads drill 🤣)

Jace is a bit more severe than Mikaere is, in that his body is in more pain and his seizures are more severe, but gosh did he steal my absolute heart when I met him.

I’m so glad I got the opportunity to give him a wee cwtch, after meeting him it lit a fire in my heart to do more to change the course of NKH. To raise more money, to fund more research. Because Jace is the absolute sweetest and deserves so much more than the hand he’s been dealt. NKH is awful, for my kid, and for other children too.

I feel pretty lucky to have met Jace. What a privilege!

#nonketotichyperglycinemia #nkh #nkhawareness #ifhnkh #metabolicdisorder #glycineencephalopathy @bladezforjace from Instagram: https://instagr.am/p/C8C7XmnIKS6/

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