In honour of Mikaere’s SEVENTH (!!) birthday tomorrow, we’re raising funds for NKH Research, in the hope that one day, other kids with Nonketotic Hyperglycinemia will also see their seventh birthdays and that one day, we won’t be counting birthdays and wondering if this will be the last one we celebrate with him.
Just, my Mama heart. If you told me, that Mama that stood in NICU, who couldn’t stop crying, waiting for her babe to pass that we would have SEVEN (!!!) years with our guy, she wouldn’t have believed you. She wouldn’t have believed that we could be SO LUCKY! Seven! Can you even imagine?
I say this with a certain amount of disbelief, because we were constantly told he wouldn’t survive, and have been conditioned to expect death imminently.
We’ve been witness to many, many NKH kids who have gained their angel wings, and we are, as always, waiting for the day it’s our turn to grieve. We know it’s coming, and we don’t take for granted any day we have with our boy.
Seven years – we’re so lucky. So so so lucky.
So please donate – in honour of Mikaere’s birthday, and to give hope that one day, we’ll be able to take all the days and years for granted, because NKH won’t even be a thing anymore!
Happy birthday sweet boy, we love you so much! x
Donate here:
https://www.facebook.com/donate/1011942056593715/703402091819100
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