It’s with the heaviest of hearts we share that our beautiful darling boy, Mikaere Grant Hulance (Kai to all who knew him) has died. We are heartbroken, and will always love him. Now it’s in how we live moving forward that we honour him.

These funds will be used to continue the work we do, supporting children and families with NKH and funding a cure - because the Mikaere Foundation was never just about our sweet boy. It’s for change for all kids with NKH - so one day children can have futures, live free of pain, dystonia and seizures. So families don’t need to say goodbye to their beloved children like Mikaere’s has.

Because no other family should feel like we do. And it’s our genuine wish that one day, that when a child is diagnosed with NKH, their family is not sat down by a doctor, and told their child will die sooner than they would expect.

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His funeral was on Wednesday, the 21st of August at 12:30pm, at the St Albans Woodland Burial Grounds in Keysoe, in Bedfordshire (MK44 2JP). There will be a funeral reception afterwards at the Fox and Hounds, 54 High St, Riseley (MK44 1DT), which is a ten minute drive from the burial ground.

Instead of flowers, please donate £50 in his honour instead.

Fly high, our beautiful boy.