On all the cars

By 28th April 2024 April 29th, 2024 No Comments

I posted in our stories last week about how we took Mikaere to see a lot of cars. That’s not exactly the whole truth. We were travelling to see family and part of the problem we have is that our boy can’t just use any toilet. We need a changing places facility, with a hoist and a changing table capable of holding his weight. This isn’t an easy thing to find and requires an intense amount of research before going anywhere.

(Just for clarification, it’s estimated there are over 80 million toilets in the UK. There are only 2000 changing places facilities).

This museum (the British Motor Museum) has one, funded by @musculardystrophyuk (thank god for them). This museum was about half way, had a changing places facility, a cafe that serves gluten free food (for Sam) and is aligned with our toddlers interests. Hallelujah!

If researching where you can go to the toilet before you leave the house is not something you need to do, please know that is a privilege not everyone has.

It’s NKH Awareness Day next week. Please consider donating so we can change the course of this disorder.

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

from Instagram: https://instagr.am/p/C6TPkaLIJdU/

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