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On the PPod

By 29th April 2024 No Comments

I want to share today about this chair. It’s a giant chair. Anyone with a disabled kid would recognise it – it’s called a Ppod. We were given a grant to get one, because they’re expensive. This one is moulded especially for Kai, but even still…

The reason we got one is because Kai has three chairs. Two up/down position ones, and his wheelchair. They’re basically like sitting in a dining room table chair, with a little padding. Not very comfortable, and awkwardly, not very supportive because they need adjusting more often than we can get the reps out.

Kai’s getting older, and his body bigger. His spine is beginning to twist into scoliosis and his hips are migrating out of their sockets and his neck and top of his spine are rounding… these musculoskeletal congenital malformations are typical of NKH, but oh my DAYS does it break my heart when he’s in pain.

So we applied for a grant to get him a supportive armchair. Something comfy but still supportive. I think he likes it.

Ps – Thank you everyone for your donations for NKH Awarness Day. I feel like you’re all in our corner 💛🙏

May 2nd is NKH Awareness Day – we’re asking instead of your daily flat white, please swap your coffee today for a donation towards NKH Research so families won’t need to worry about NKH moving forward. Please. Please donate. £3. £5. £15. Whatever you are able. #linkInProfile⁠

Justgiving:
https://ift.tt/fi0gqe4

#medicallyfragile #nkhawareness #nkhcansuckit #disabilityLife #nonketoticHyperglycinemia #glycineencephalopathy #raredisease #seizures #teammikaere #nkhAwarnessDay2024 #someoneFundACure #nkh #ifhnkh #metabolicdisorder #glycineencephalopathy #cureNeeded #disabledKid #disabled #disability #complexmedicalneeds

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