What we’re up to… May 19, 2024 at 12:24PM

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Introducing another book! Where is the purple car? This one is for our car loving toddler (though, to be honest, he pretty much loves anything that moves ūü§£). It‚Äôs a cute book for small kids, with a lot of repetition and opposites vocab.

It‚Äôs not yet available in multiple languages, but will be soon available in French, Spanish and Welsh! If there‚Äôs a language you want to see it in, let us know and we‚Äôll prioritise your requested language ūüôā

‚ÄúWhere is the purple racing car?‚ÄĚ the first in a series (spoiler: diggers are coming soon!) and as always, all the royalties go to NKH Research and helping support kids with NKH. We‚Äôre making a difference, one book at a time!

Available on Amazon: amzn.to/3UMdlxs (#linkInBio)

Just quietly, we‚Äôre all chuffed with this one. It‚Äôs real cute! Tig especially likes shouting ‚Äúlet‚Äôs keep LOOKING!‚ÄĚ at the top of his wee little lungs ūü§£

#nonketotichyperglycinemia #nkh #nkhawareness #ifhnkh #metabolicdisorder #glycineencephalopathy #teamMikaere #theMikaereFoundation #nkhcansuckit #cure4nkh #nkhResearch #fundraising #booksForWednesdays #charitybooks #whereIsThePurpleRacingCar from Instagram: https://instagr.am/p/C7JfSl2oE8O/

What we’re up to… May 01, 2024 at 02:16PM

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Hi. First, thank you for all the love and messages. Mikaere has turned a corner and is doing okay, compared to how things were. I want to apologise: I posted a somewhat emotional and wildly vulnerable post yesterday, and I shouldn’t have (sorry). Not to you guys, but to our boy. He deserves more dignity than a terrified, sleep deprived mama sharing his private medical moments on Instagram (whoops).

Mikaere had a very, very hard day yesterday, and I had a social schedule that I was trying to stick to (because #NKHAwarenessDay) and so let my feelings in the moment loose on Instagram. I scared a lot of people, so apologies (we were very scared, too). Thank you for all the love, and messages though.

Palliative life with NKH is coming up against that barrier that is the unimaginable loss, anticipating it, knowing it’s in your future and doing everything in your path to avoid the horror that is saying goodbye to your child. It’s having painful conversations with your medical team, it’s talking about quality of death as much as quality of life. It’s just… it’s hard. This level of grief and love, held concurrently is HARD.

Mikaere’s been transferred to hospice on a symptom stay and we’re hopeful Mikaere will continue on in his current trajectory and will be okay. Cross your fingers for us! Or even better, donate to NKH Awareness Day:

#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/C6bV1F-oiL9/

What we’re up to… April 30, 2024 at 12:25PM

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This is not how I was expecting today to go. If you are not in A&E watching a man hold your child’s airway open, if you’re not revisiting end of life care plans, if you’re not trying to make your brain accept that the unimaginable might have to fit into your today, please, god, thank your lucky stars.

I am silently screaming my despair into the void because I AM NOT READY. Please, please, please, I want to change direction (please sweet boy, change direction). Hug your children today. Just hug them and be grateful you’re not waiting for fate to decide anything for you today.

I’m meant to be posting for NKH Awareness Day, but here is all you need to know: NKH is shit. It’s awful and I hate it with every single bone in my body, and may you never, ever have to live alongside it.

Donate: https://ift.tt/fi0gqe4

Donate, because we absolutely will not let our sweet boy go without a fight.

#teammikaere #ifhnkh #faithAndFortitude

(We’re having a hard time, our boy most of all. Cross your fingers for us). from Instagram: https://instagr.am/p/C6YkTJNoRgB/

On the PPod

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I want to share today about this chair. It’s a giant chair. Anyone with a disabled kid would recognise it Рit’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‚Äôre all in our corner ūüíõūüôŹ

May 2nd is NKH Awareness Day – we‚Äôre asking instead of your daily flat white, please swap your coffee today for a donation towards NKH Research so families won‚Äôt need to worry about NKH moving forward. Please. Please donate. ¬£3. ¬£5. ¬£15. Whatever you are able.¬†#linkInProfile‚Ā†


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

On all the cars

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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/

On NKH Awareness Day

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This is our sixth NKH Awareness Day. When the first one came around I was in shock, still really grappling with our life, still, if I‚Äôm honest, in denial that my baby was even disabled (despite having just been discharged from hospice on end of life care… trauma coping mechanisms are wild).

This year, god I’m tired of asking. It feels hard to keep holding out my hand to ask, repeatedly. I’m skydiving, I’m selling books, and I’m asking people to donate, I’m asking people to run РI’m a never ending bucket shaker, shaking my little heart out in sheer desperation.

Because when I‚Äôm shaking my little ‚Äėplease god HELP ME‚Äô bucket – what I‚Äôm not sharing is the seizures. The screaming, the pain. The days where my boy doesn‚Äôt wake up. The WEEKS he‚Äôs had off school. The panic when the sats monitor goes down to 80, and I‚Äôm yanking him out of bed to try get him to breathe. The cough that causes him to vomit his meds, retching until his stomach is empty, causing us both to be in tears. Him, because of discomfort, me, because I know I can‚Äôt give regive the meds and now he‚Äôs going to be in so much pain, he‚Äôs going to have more seizures and it‚Äôs going to be a shit time for everyone. This isn‚Äôt a phase. This is his life.

I’ve been trying really hard to give him his dignity, because people on the internet don’t need to know, in real time, the hard. But it IS hard. And the harder it gets, the more I start shaking little donation bucket because something has to CHANGE. And I can’t fix his genes, I can’t take away the seizures or the vomiting or the pain. But what I can do is ask for donations (again). Because here’s the thing, if I make £15 for NKH research, that’s not nothing. That is a tiny inch, in the right direction.

I also think this is going to be the last time I ask for donations on NKH Awareness day you guys. This is so hard. SO HARD. You guys have been in our corner, so wonderfully supportive, but I’m tapped out. This is an emotional week, remembering kids who we love, who are in pain, who have died. So, I guess, please donate? For the last #nkhawarenessday?