The Inaugural #TeamMikaere Run

By 27th January 2020 One Comment

I’m super, super late getting this post up, considering it was last September. But, The Run! Capital T, Capital R.  You must have seen the many posts leading up to it, I was all over instagram + facebook, trying to get convince people to run, to volunteer, to donate. It was the first time we’d organised an event that felt this big, that required a proper team of volunteers and tickets and several days prep and it’s own fancy website – and I was so anxious that it go well!

But here’s the thing. We have asked every single person we know for a donation. We saturated our friends and families asking for donations. You know this, if you read our blog posts, because we ask you ALL THE TIME! We know there are only so many times we can go to our loved ones with our hands out. Because you’ve all already donated (and we love you for it) and the way we keep asking, with our desperation close in to our hearts, it’s disparaging.

So now we do events, because it’s more than just putting your hand out and asking. Because events mean our friends can bring their friends (which is reaching people outside our social circle). And because events feel like we’re *doing* something, something more than just posting another fundraising link to our social channels and crossing our fingers. But I’ve never organised a run before. Did you know that runs need Race Directors? And water stops (I literally didn’t, until the morning of our run, until our newly acquired Race Director very gently let me know that I should get *a lot* more water).

But, oh my days, we had 30 runners sign up. 30 people, who had committed to raising £100 each for NKH Research, to join us around the 12km course.  We had a dozen or so volunteers, from manning the water stops, to cheering us on, to follow us around the course and man the bag drop and put out arrows.

You guys…. 12km is not a short distance. I struggled. And in case it’s not clear what I mean by that: I was the very last one across the finish line, and I almost bawled my eyes out as I crossed it.  My son is never going to run. Not a single step, not 12km. NKH has robbed him of that opportunity.

Which meant that every step felt personal. It helped that Sam had pushed him around the course before me, and that one of my nearest and dearest, Breege (who lives the grief and special needs life too) ran alongside with me, letting me feel my feels as I went. This run, this fundraising, it’s personal. This was not ‘just’a another fundraising event (are they ever?)… This run genuinely was about hope. My hope. The hope that one day kids with severe NKH will run. That they’ll take steps independent of support equipment. That they’ll find the joy in independent movement.

I can’t tell you how much I want that for my son. The depths to which I hope and wish, and the overwhelming and shattering grief when the reality is unlikely for him. (Grief… it’s real and hard and we live with it everyday. You know how it is. I’m always bringing my grief to the internet). So, this run was personal for us. We were joined by two other NKH families, which made this run special. It’s always heartening to know we’re not alone. That there are people in our corner who share our life, our grief and our love.

Thank you to everyone who donated. Thank you to everyone who fundraised. Who ran, and volunteered (hi Lucy!) and who showed up to give NKH the finger. We love you, and we’re grateful. So so so grateful.

With matching, raised £12,741.00 – isn’t that a phenomenal amount?! It makes me quite teary. This means so much, so so so much to the world of NKH Research. I’m grateful for the love and persistence with which our runners met their fundraising pledges.

It’s important to me that everyone knows that our valiant fundraising efforts do not disappear into the ether. The funds were donated to Joseph’s Goal (run by Emma + Paul Kendrick, whose son Joe has NKH) and from there (in full) to Prof. Nick Greene at UCL, who is currently the world leader in NKH Research.

Funds like this make a tangible difference in the research that can be done by Nick.  When we met him earlier this year, he said donations like ours have sped up his research by approximately 18 months. That is life changing, when most children with NKH won’t see their first birthday. His team are making progress, which give us hope, something to hang to to.

Through him you give us hope that children with NKH might have a different future.

I also want to take a moment and thank Lou and Sam. Because without their love, and determination (and that cheeky lunchtime pint at our local) this run wouldn’t have happened. We love you guys, for offering help and for saying ‘ yes we can’ to something which felt impossible. We did it!

We’ll be back again next year. Do you fancy joining us?

If running is not your thing, is eating chicken nuggets? Fancy signing up the chicken nugget challenge – it goes down at the end of Feb!  www.teammikaere.com/chicken-nugget-challenge



Join the discussion One Comment

  • Lucy says:

    Hi Elly! 👋🏻 I had such a good time that day, everyone was so kind and friendly. You are all such lovely people. I’m so pleased the run was such a success and I’d be more than happy to help out (and maybe even run) next time. Wishing you, Sam and Mikaere all the best. Lucy x

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