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#teammikaere

On NKH Awareness Day 2018

By 2nd May 2018 No Comments

Today, May 2nd is NKH Awareness Day. I’m guessing that as you all are reading this, and you’re following along on IG or FB, you know what NKH is. You know that Mikaere has it, and you know it’s nothing something I’d wish on anyone.

For those of you that are new to #TeamMikaere – hi! Welcome! NKH stands for Nonketotic Hyperglycinemia and it’s a genetic metabolic disorder that means Mikaere can’t process glycine. Glycine is neurotransmitter and toxic levels in the brain mean severe developmental delay, seizures, feeding difficulties and highly medicalised life. It’s also terminal. Womp. You can find out more about NKH at foundationnkh.org

Rubbish, hey? Wouldn’t wish it on anyone. But along with the grief and pain and suffering, there are moments of joy. Kai is well loved. Not just by us, but you guys have been overwhelmingly supportive. We’re genuinely grateful for all the love our little guy has received from the world over. You guys are the best.

We’re asking that today, on NKH Awareness Day you skip your morning starbucks and donate £3 towards research. If you’re in the UK you can text – “NKHC50 £3” to 70070. If you’re not in the UK, you can donate at www.bit.ly/nkhcure

If donating is not your thing, there are other things you can do:

  1. Tell someone about NKH. Tell them about Kai, and what it’s like and how rare it is. Tell them we’re fundraising for a cure.
  2. Practice saying Nonketotic Hyperglycinemia. It’s what NKH stands for. Or, if you’re really feeling fancy, give Glycine Encephalopathy a go.
  3. Help us turn facebook yellow and update your facebook profile picture with a yellow banner here (desktop only – sorry!) and a facebook cover photo here  (or visit fundnkhcure.com for both!)
  4. Purchase an Eva the Adventurer book. Less than £5 and royalties go to NKH Research

 

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