There are a few NKH family support groups. A worldwide one, a UK one and one where you can ask questions and the community will answer. Depending on how Mikaere is and how much time I have dictates how active I am in them. But I’m active enough to know the regulars. These NKH community groups have been a lifeline to share my fears and delights and to help answer questions in terms of research or care or medication or how to deal with feeds or our medical team. They are an unparalleled line of support. I think it’s one of the benefits of having a diagnosis, is that you can find others who live the same life you do. Who have the same fears and have had to make the same choices.
There is one family we’ve met who are just a delight. We’ve been talking for months and months and a few weeks ago we happened to be in their neck of the woods. So we went by for a visit. It makes such a difference meeting people who get it, who live the same life you do.
Arthur is the sweetest little guy you could ever meet. It’s hard to tell from the photos/videos on Facebook, but he’s well more aware, active and more beautiful in person than I realised. I found it really difficult not to stare, he was just so amazing. And I know, NKH kids all present differently thanks to the hundreds of different mutations that cause it, but I couldn’t get over how amazing he was.
His Mum, Charlene was also a delight. We’ve been talking for just over a year – and honestly, meeting felt like were just continuing an ongoing conversation. It was so nice, so nice to talk to people who got it, to talk research and nurses and support. It was also so nice to do meds and feeds with someone who was also doing meds and feeds at the same time. And oh Ellie, totally fell in love when we met her. She was shy to start, but Sam won her over first and before we knew it we were bff’s (she loves Totoro more than I do, which is saying something).
I was sad to say goodbye. I was sad that we live so far from each other, but you guys! It’s just like finding family. I’m glad we’ve got people in our corner who understand. I’m hopeful we’ll see each other again soon! Fingers crossed.
PS, if you’d like to follow Arthur on facebook, you can do so over at Arthurs Adventures with NKH
