On saying goodbye

By 21st July 2017 2 Comments

Today when we woke, I found out three small little NKH bees have passed on. I’m heartbroken, I really am. NKH is taking one of our own every few months. MONTHS, hey. This is not okay, this is absolute rubbish. No one wants to say gbye to their babies. It’s so horrifically unfair. 

The shit thing is that I feel like we’re fighting against something as immovable as the tide with Kai – that one day we’ll have to say our own g’bye and just… I can’t even begin to talk about how heavy that makes my heart. How furious. I want to rage, I want to howl because it’s so horrifically horrifically unfair.  And then I think that there are three families right now who are hurting. Three lives that NKH has taken, three beautiful little children that should have grown up. That should have learnt to ride bikes and enjoyed the never ending summers and graduated and travelled and loved and LIVED. 

But they didn’t. Because NKH is horrific.

I hate NKH. I hate it with such a passion. 

I hate even more that the cure is being held back by something as stupid as money. That our children could be given futures if they’d been born to millionaires. That gene therapy could be an honest to goodness thing we could do to save our kids if there was enough funding for it. 

How horrifically unfair.

Today I’m hugging Kai a little closer. The truth is that the more kids pass on, the more anxious I get. The more I google the term ‘NKH life expectancy’, the more I look into the why’s and how’s (it looks like it’s almost always respiratory, womp). The more I feel like we’re waiting for our turn at that horrific day.

I’m fiercely hopeful an NKH cure will be found soon (c’mon Prof Nick Greene, were rooting for you). I throw myself more and more into fundraising, what else I can do, what other event could we throw?

Please donate, hey. Help us fund a cure. Children just like Kai are dying. They’re dying regularly. This is not an abstract someone else’s baby, hey. This is our children. With faces and names. And it’s heartbreaking.

Fly high Evelyn, Bradley & Boone. You three were well loved, and will missed fiercely by your NKH family xx

Join the discussion 2 Comments

  • B says:

    I’m so sorry. It’s always horrible when someone is sick with something that we still can’t figure out but when it’s kids and babies? It just doesn’t seem fair.

    • Elly Rarg says:

      Agree – it’s SO tough! I feel like we’re so close to a cure too. It’s crazy that it’s something as silly as money getting in the way 🙁

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