What we’re up to… October 22, 2024 at 10:00AM

On this day 22.10.2016. This was diagnosis day. I didn’t know it, in this picture. In this picture I was just happy to have a chance at a cuddle. This was the first cuddle in literally days, and it was only 30 minutes. They taped the vent to my shoulder and I had sit very very still. It was heartbreaking, knowing that I desperately wanted to cuddle my baby, that I didn’t know the next time I’d get to, but equally, that if I moved, he would stop breathing.

I think almost every parent I know who has a medically complex child remembers their diagnosis day (except, of course, the parents of children who didn’t get a diagnosis 💔). It’s earth shattering. To finally know what’s going on, but not able to do anything about it. To worry about your beautiful babies future, to be told ‘global developmental delay’ and ‘life limiting’ and ‘profoundly disabled’. Seizures, dystonia, pain. I couldn’t imagine what raising a disabled child would look like, or what it would all mean, in reality. Here is what I would have told myself: it’s mostly just love. The tube feeding and the not walking and the seizures – love got us through. (It’s also love that’s decimating my heart right now, when he’s not here, but you know. I’d take every single moment over again, if I could).

He came so far, you know? In his eight years. Looking at this photo, and knowing that we had so many of these beautiful cuddles together. God, it hurts to know I won’t be able to cuddle him again.

NKH is just the most brutal, and I hate what it has stolen from us. This is why we fundraise though. To stop it from stealing life and joy from others, even if it’s too late for us.

#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit �#fundraising #teamMikaere #theMikaereFoundation from Instagram: https://instagr.am/p/DBa60XoBFdy/