On NKH Awareness Day

By 27th April 2024 April 29th, 2024 No Comments

This is our sixth NKH Awareness Day. When the first one came around I was in shock, still really grappling with our life, still, if I’m honest, in denial that my baby was even disabled (despite having just been discharged from hospice on end of life care… trauma coping mechanisms are wild).

This year, god I’m tired of asking. It feels hard to keep holding out my hand to ask, repeatedly. I’m skydiving, I’m selling books, and I’m asking people to donate, I’m asking people to run – I’m a never ending bucket shaker, shaking my little heart out in sheer desperation.

Because when I’m shaking my little ‘please god HELP ME’ bucket – what I’m not sharing is the seizures. The screaming, the pain. The days where my boy doesn’t wake up. The WEEKS he’s had off school. The panic when the sats monitor goes down to 80, and I’m yanking him out of bed to try get him to breathe. The cough that causes him to vomit his meds, retching until his stomach is empty, causing us both to be in tears. Him, because of discomfort, me, because I know I can’t give regive the meds and now he’s going to be in so much pain, he’s going to have more seizures and it’s going to be a shit time for everyone. This isn’t a phase. This is his life.

I’ve been trying really hard to give him his dignity, because people on the internet don’t need to know, in real time, the hard. But it IS hard. And the harder it gets, the more I start shaking little donation bucket because something has to CHANGE. And I can’t fix his genes, I can’t take away the seizures or the vomiting or the pain. But what I can do is ask for donations (again). Because here’s the thing, if I make £15 for NKH research, that’s not nothing. That is a tiny inch, in the right direction.

I also think this is going to be the last time I ask for donations on NKH Awareness day you guys. This is so hard. SO HARD. You guys have been in our corner, so wonderfully supportive, but I’m tapped out. This is an emotional week, remembering kids who we love, who are in pain, who have died. So, I guess, please donate? For the last #nkhawarenessday?



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