Over the last week we’ve raised over £1,600 for NKH Research for Mikaere’s Birthday. Just – wow. Thank you, to everyone who donated, who shared and invited and commented, we’re grateful. Genuinely, we are.
It feels pretty overwhelming, but when it comes down to it I’m glad you’re all here. That Mikaere is known, and loved. This might be his last birthday, or we might have years, we don’t know. The not knowing is hard, trying to parallel plan (which is just a bs medical term, because how are you meant to plan for your kids death, really?). We’re in an in between, of knowing it’s coming, but really not wanting it to, and trying to enjoy every day we have until then. The urgency is both less, because it’s been years, but also more, because every day that passes is another day closer. It’s very cognitively dissonant place to be – but I guess that’s the life as a parent of a disabled child with the rare and terminal metabolic disorder?
Obviously my hope is that we raise enough to fund a cure that can be pushed to medical trials, so that NKH is not even a thing any more. Because how great would that be, a world WITHOUT NKH?! It’s a long term, slim chance kind of hope, but I’m clinging to it (wouldn’t you, too?)
So thank you for your donations and your love. We’re so grateful. We love you x
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