What we’re up to… June 13, 2024 at 06:38AM

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Fancy an achievable moving challenge for a good cause? Because 1 in 3 babies born with NKH won’t see their first birthday (💔), and the others live with seizures and pain and dystonia, and are unlikely to see their tenth birthday (💔). We can change this! With just walking (!)

The NKH 100 Mile Challenge is kicking off in TWO Weeks – if you want to sign up, now is the time!!

You can do this challenge from anywhere! America? Perfect. UK? New Zealand? Australia? Spain? Portugal? France? Yes, get in! It’s a virtual challenge, we’re all in it together.

Join us! More info at www.nkhcharityrun.com #linkInbio

As always, the proceeds from this challenge go to support kids and families with NKH and research into gene therapy treatment for NKH, via the Mikaere Foundation.

The Challenge kicks off 1st of July. Sign up now! nkhcharityrun.com

Get in!

#nonketotichyperglycinemia #nkh #nkhawareness #ifhnkh #metabolicdisorder #teamMikaere #glycineencephalopathy #nkhcansuckit #cure4nkh #fundraising #nkhawareness #nkh100MileChallenge #raisingFunds #getMoving #100milechallenge #100milesinamonth from Instagram: https://instagr.am/p/C8JPnLCoN9x/

What we’re up to… June 12, 2024 at 08:49AM

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Oh sweet boy. Our guy isn’t doing 100% right now, he’s recovering from some kind of virus (blah change in seasons). He had a very gentle physio session and I’m so glad he did – sometimes it’s hard to know whether you should cancel and give him a break or have them come in the hope they help (but also, potentially running the risk of wearing him out). It’s a never ending guessing game, but I’m so glad we gave the green light this time.

Kai can’t tell you what hurts, but his physio Kerry is a magician of physiological mechanics. She measured up his legs and saw that his ankles were misaligned (meaning one leg was more than a good cm out) and she worked her way up his body, gently releasing the tension and knots. For some of the trickier knots she used a tubing fork set to a specific frequency. She hit it on the tip of a rubber mallet, and the very gently placed it on his body. It was magic to watch, as his muscles relaxed and became more supple. By the time she’s finished his legs were the same length again.

There was some gentle work, even a moment of standing (!) and homework for us, too. It’s was a lovely session and I’m glad the gamble of not cancelling paid off! It’s so hard, hey? To know if you’re hindering or helping. Still, here we are, doing our best. Onwards onwards!

PS – we’re doing the 100 mile challenge in July to raise money for NKH Research- join us? It’s an easy challenge (7500 steps a day) with a small, very achievable fundraising ask. Maybe do it with some friends and help us out? >>> nkhcharityrun.com from Instagram: https://instagr.am/p/C8G5vghoFLo/

What we’re up to… June 10, 2024 at 07:46PM

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I got to meet this sweet boy in May, when I visited Wales for the skydive. This is Jace, he’s only six months younger than Mikaere is and oh my absolute heart it was a pleasure to meet this little guy. First off, he’s pretty hilarious. He’s nonverbal (like Mikaere) but is able to tell you pretty clearly what he likes and what he doesn’t (I brought a few toys for him which he wasn’t interested in at all, but he was pretty keen on his Dads drill đŸ€Ł)

Jace is a bit more severe than Mikaere is, in that his body is in more pain and his seizures are more severe, but gosh did he steal my absolute heart when I met him.

I’m so glad I got the opportunity to give him a wee cwtch, after meeting him it lit a fire in my heart to do more to change the course of NKH. To raise more money, to fund more research. Because Jace is the absolute sweetest and deserves so much more than the hand he’s been dealt. NKH is awful, for my kid, and for other children too.

I feel pretty lucky to have met Jace. What a privilege!

#nonketotichyperglycinemia #nkh #nkhawareness #ifhnkh #metabolicdisorder #glycineencephalopathy @bladezforjace from Instagram: https://instagr.am/p/C8C7XmnIKS6/

What we’re up to… May 25, 2024 at 05:26PM

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We took this guy out adventuring this morning. It’s been a while since we used the Delta (a wheelchair appropriate for off pavements) and it was great! There’s really something about exploring in a natural setting that’s satisfying for everyone.

In saying that, it did feel like a monumental effort getting out (having to lug two wheelchairs, plus feeds and people staring as you feed by tube, the wheels were flat and we asked some kind nearby cyclists if we could borrow their bike pumps, we had to lift the wheelchair over some logs at one point, and almost got chased by some geese
) BUT our boy had a great time, and it was really wonderful to be able to make memories like today đŸ’›đŸđŸ„°

#nonketotichyperglycinemia #nkh #nkhawareness #ifhnkh #metabolicdisorder #glycineencephalopathy #teamMikaere #theMikaereFoundation #nkhcansuckit #cure4nkh from Instagram: https://instagr.am/p/C7ZespQIXWQ/

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 đŸ€Ł). It’s a cute book for small kids, with a lot of repetition and opposites vocab.

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

“Where is the purple racing car?” 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’re making a difference, one book at a time!

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

Just quietly, we’re all chuffed with this one. It’s real cute! Tig especially likes shouting “let’s keep LOOKING!” at the top of his wee little lungs đŸ€Ł

#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 – 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. ÂŁ3. ÂŁ5. ÂŁ15. Whatever you are able. #linkInProfile⁠


#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’m 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 – I’m a never ending bucket shaker, shaking my little heart out in sheer desperation.

Because when I’m shaking my little ‘please god HELP ME’ bucket – what I’m not sharing is the seizures. The screaming, the pain. The days where my boy doesn’t wake up. The WEEKS he’s had off school. The panic when the sats monitor goes down to 80, and I’m 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’t give regive the meds and now he’s going to be in so much pain, he’s going to have more seizures and it’s going to be a shit time for everyone. This isn’t 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?