On all the good things

By 5th February 2017 No Comments

Oh my DAYS! So many good things are going on at the moment. The first, and the most exciting, is that every now and then Kai smiles.

It’s so heartwarming and I cried the very first time it happened. Usually we get windy grins, but to have a proper social smile. Well… I’m not sure if it’s a social smile. It’s not a reaction to anything we do, but there are just a few moments when Kai seems happy, and smiles like he’s got his own private little joke going on. My baby smiles!!!

There was one study that marked NKH severity on a bunch of developmental milestones, and the first milestone was smiling. And now my guy does it! He smiles!!!!!

The second good thing, just, gosh. We have raised an enormous amount of money for Joseph’s Goal. Almost £8k. (Almost £10k if you count the small fundraiser we ran with Sam’s work). We are overwhelmed and so grateful to everyone who has donated. To everyone who has shared our story. We’ve had friends of friends donate, customers of stores (thanks Tom + the chocolate deli customers!), pay it forward favours (heart to Stephanie Kaloi and her kindness) and just… so many people. So much love.

Emma Kendrick is Joe’s Mum, of Joseph’s Goal. She messaged me the other day to thank me (and really you guys) for all the fundraising, and then to say that they would be donating an extra £40,000 (!!!!!) to Dr Nick Greene’s research. That blows my mind. That’s not quite six months worth of research (with one post grad, on one hypothesis). Very very pleased. Nick even said that being able to plan ahead with the work is already allowing them move faster and start work that would have needed new grant applications. I think there is more research going on towards potential therapies than ever before. Woohoo!

The third amazing thing is that friends of ours play with the Fulham Brass Band. They’re doing a charity concert in May for Joseph’s Goal (expect to hear more later in the year, hopefully all of you London folk will come along with us?) AND (I love that there is an and) the lead Brass Band man is the editor for Drug Discovery Today (!) and has invited a few researchers to write a piece up for NKH! Charity work *and* amazing awareness. Ahhh!

I am blown away by all the good things. Love it. So happy!!! I feel like we have more downs than ups, but on days like this one, the ups are pretty up.



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