#teammikaere

One of the things we did to celebrate Mikaere’s seventh (!) birthday was to take him bowling. It ended up being really really wonderful – the alley was black lit neon (meaning super high contrast, easy for him to see). The motion was simple (pushing the ball down a ramp – we had the gutters up for him) and repetitive, so he was able to anticipate what was expected of him, and there was a big crash when the ball hit the pins! So lots of great feedback and smiles, and general happy communication.

Mikaere had a great time, and he even won! We’ve had a few weeks of illness and tricky times, so I’m really glad that he’s pulled through and we were able to make some happy memories. As far as experiences go, this one was a winner!

#bowling#nonketotichyperglycinemia#nkh#nkhawareness#ifhnkh#metabolicdisorder#teamMikaere#glycineencephalopathy#nkhcansuckit

Oh bub. One of the tricky things about birthdays is gifts (and the guilt I have about gift giving and birthdays and the frustration that I can’t really gift him what I want to, which is a life without NKH – anyway, it’s a wildly triggering time)

A lot of gifts just aren’t appropriate for our boy and finding things that work well for him (that aren’t a million pounds with the disability mark up) is tricky. We usually try find things our boy can easily play with, paired with an experience. The problem is we have most of the switch toys (and lasers, sensory kit, bells, singamals, foot baths, black light and neon visuals, buzzers etc etc etc). We have a gift list to make it easier for others wanting to purchase something for him, but we’re getting into the realm of we have everything, what else can we get for him? Because unlike other children, Mikaere isn’t going to age out of his development stage, into the next range of toys. He’s not going to become obsessed with the next whatever it is.

Still, sometimes it’s okay to fall back on an old favourite – the space blanket continues to be one of the best, it’s lightweight, bright and makes a great sound. Loads of smiles from Kai when we opened this! It was his first gift as a teeny babe, and it’s still such a winner. It cycles in and out of play, but there’s nothing like a brand new, fresh from the package space blanket.

#birthday#nonketotichyperglycinemia#nkh#nkhawareness#ifhnkh#metabolicdisorder#teamMikaere#glycineencephalopathy#nkhcansuckit

In honour of Mikaere’s SEVENTH (!!) birthday tomorrow, we’re raising funds for NKH Research, in the hope that one day, other kids with Nonketotic Hyperglycinemia will also see their seventh birthdays and that one day, we won’t be counting birthdays and wondering if this will be the last one we celebrate with him.

Just, my Mama heart. If you told me, that Mama that stood in NICU, who couldn’t stop crying, waiting for her babe to pass that we would have SEVEN (!!!) years with our guy, she wouldn’t have believed you. She wouldn’t have believed that we could be SO LUCKY! Seven! Can you even imagine?

I say this with a certain amount of disbelief, because we were constantly told he wouldn’t survive, and have been conditioned to expect death imminently.

We’ve been witness to many, many NKH kids who have gained their angel wings, and we are, as always, waiting for the day it’s our turn to grieve. We know it’s coming, and we don’t take for granted any day we have with our boy.

Seven years – we’re so lucky. So so so lucky.

So please donate – in honour of Mikaere’s birthday, and to give hope that one day, we’ll be able to take all the days and years for granted, because NKH won’t even be a thing anymore!

Happy birthday sweet boy, we love you so much! x

Donate here:
https://www.facebook.com/donate/1011942056593715/703402091819100

#birthday#nonketotichyperglycinemia#nkh#nkhawareness#ifhnkh#metabolicdisorder#teamMikaere#glycineencephalopathy#nkhcansuckit#cure4nkh#fundraising#SEVEN

Charlie the Crow – love easy sensory stories, it’s so fun to extend the story with stuff you already have on hand. Available on Amazon, all proceeds go to NKH gene therapy research 🙂

Illustrations by the amazing @zoeellison__ Mikaere supported by the brilliant Bettina of @conductive_education_london 💛🙏

#nonketotichyperglycinemia#nkh#nkhawareness#ifhnkh#metabolicdisorder#teamMikaere#glycineencephalopathy#nkhcansuckit#cure4nkh#fundraising#charliethecrow#childrensBook#booksforWednesdays#teamMikaere#themikaerefoundation

This kid, he started the school year with an eyeroll, and a pointed “okay please go away now, Mama, I’m at school”

It means a lot of us that our boy is at a school where we work with the teaching/therapist teams, where we’re all on the same side (which is what’s best for our boy) – we’re not fighting to be heard. For him to be going somewhere where he is seen, where he is thriving, where there is trust, is everything.

I just love him so much, and he’s going to school!!

We’re grateful – here’s to another wonderful academic year! 🙌

#nonketotichyperglycinemia#nkh#nkhawareness#ifhnkh#metabolicdisorder#teamMikaere#glycineencephalopathy#nkhcansuckit#cure4nkh#fundraising

How many people are needed to fix/adjust a chair? Four. Four people came for this wretched chair. It’s an R82 Xpanda, and it’s wildly adjustable and supportive for disabled kiddos like Mikaere, who need the extra bit of help to sit comfortably.

But… because of its extreme adjustability (literally every aspect of it can be adjusted), it means that things get knocked or loose or out of place and WITHIN days our boy is uncomfortable again.

Sometimes we wait for people to come fix it (the wait is always long). Sometimes we get sick of waiting and go at it with an allen key. I’m very glad we have supportive seating for our guy, for play and for eating, an alternative to his wheelchair, but I wish it was more robust. I don’t know how often I’ve fought with it to make sure my boy is comfortable!

It’s just one of the many, many aspects of our day to day. Comfortable chairs. 100% taken for granted by people who don’t need adjustable, supportive seating.

#nonketotichyperglycinemia#nkh#nkhawareness#ifhnkh#metabolicdisorder#teamMikaere#glycineencephalopathy#nkhcansuckit

A few months ago we made the decision to purchase a WAV (a wheelchair accessible vehicle). We’d been waiting on Motability to provide one for months and months and months (read: closer to a year than a quarter) and in that time we were lifting Mikaere in and out of his wheelchair and into his car seat. This kid isn’t small, and he’s not light. It got to the point by where I didn’t feel like I could do it safely (safe for either me or Mikaere) which meant that Sam had to come everywhere with us (which just wasn’t practical). Mikaere’s hips aren’t in the best shape, so we worried how all this manual handling was contributing to their deterioration.

Additionally, the upfront cost of the motability lease was a whopping £8k, which we’d saved, but the idea of that amount of money only covering a vehicle for the length of the lease (in addition they take ££ out of Mikaere’s benefit) felt like so much! When we missed the third “you’ll definitely have the new car by” date, we’d had enough.

So we pivoted, and found this beauty second hand. Meet Betty. She’s not new, BUT she has enough room for all of us (and a nurse!). Packing her up is a dream, and she’s made going places significantly easier.

We were lucky, in that her previous owner was literally about to “we buy any car” her when Sam reached out. We were able to negotiate what felt like an affordable discount (lower than the original asking price, higher than we buy any car) to have her be ours.

Which is lucky, because her configuration (wheelchair in the middle, two chairs either side, and one fold down in the back, and chairbench in the front) is essentially a unicorn set up. It’s exactly what we wanted, but pretty rare to see it in WAVS that are available to purchase.

Anyway, we’re pretty pleased. I wish we’d managed this earlier – having a WAV has improved our quality of life, Mikaere’s especially, and we’re grateful!

#wav#wheelchairaccessiblevehicle#nonketotichyperglycinemia#nkh#nkhawareness#ifhnkh#metabolicdisorder#teamMikaere#glycineencephalopathy#nkhcansuckit

This kid. This here is Mikaere having a chat with his neurologist, who last saw him when he was teeny tiny babe (we’ve been under a neurodisability service to manage any epilepsy related care, but that service is now in crisis, so I made a fuss and now my boy has a neurologist).

The appointment didn’t go quite as I hoped (not because of the neurologist, who is lovely, but because of the restrictions placed by the trust and the NHS which make care for intractable seizures difficult). BUT we have a work around and I’m hopeful.

The absolute highlight was my boy having a chat with his consultant. Honestly, the last time she saw him he was basically comatose, so for her to see how far he’s come, and what an absolute joy he is felt really validating.

These small moments of joy, hey? I’m living for them!

#nonketotichyperglycinemia #nkh #nkhawareness #ifhnkh #metabolicdisorder #teamMikaere #glycineencephalopathy #nkhcansuckit #neurology #seizures

These two are jumping out a plane next weekend, for NKH Research. As Andrew said:

“Alright! Having just hit the daunting age of 40, I thought, “What better way to welcome this milestone than to hurl myself out of a plane?!” As a proud Kiwi who loves an adventure, I’m embarrassed to say that I have never before thrown caution (and myself) to the wind from such dizzying heights!

And for a fantastic cause, too. Non-ketotic hyperglycinemia (NKH) is a tongue-twister that’s much harder to live with than pronounce. Thankfully, the Mikaere Foundation has been battling this since 2017, working to demystify NKH, supporting families grappling with its challenges and finding ways to give those with NKH a brighter future.

So, if you ever wanted to see a middle-aged Kiwi plummet from the sky, now’s your chance! Donate generously and give wings (metaphorically, of course) to an incredible cause! #SkydivingForNKH#KiwisCanFly

Lol. Are these two not the absolute best?

You can donate to Andrew here: https://www.justgiving.com/page/andrewjumpsoutofaplane

And Sam here:
https://www.justgiving.com/fundraising/sam-falls-from-airplane

#nonketotichyperglycinemia#nkh#nkhawareness#ifhnkh#metabolicdisorder#teamMikaere#glycineencephalopathy#nkhcansuckit#cure4nkh#fundraising#charitySkyDive#kiwisCANfly

Today we were lucky enough to spend some time with another NKH Family. This is Doms, his mama @eloiselovesherboys and his brother. Genuinely, I could have sat and chatted for ages – it’s SO nice to spend time with families who just get it, no drama, no apologies needed. When Mikaere had a few seizures or Doms coughed – there was no raised eyebrows or side looks, because their family is like our family. We understood, and were comfortable.

We were somewhere that was accessible for our boys, and Mikaere’s brother took a shine to Dom’s brother Hugo (who was very very sweet with our toddler) and it was just a really wonderful afternoon in the garden.

It was also nice to hang out with a family who is ahead of us, to be able to glimpse what our future might look like, maybe, if we’re lucky. To spend a joyous afternoon together, and to have hope like that. Often the NKH community is filled with grief and hardship, and this afternoon was a proper balm. I’m grateful, anyway, and glad we were able to make this afternoon happen 🙂

These two boys, hey? 💛🐝

#nonketotichyperglycinemia#nkh#nkhawareness#ifhnkh#metabolicdisorder#teamMikaere#glycineencephalopathy#nkhcansuckit#nkhCommunity

PS – was not expecting this post to be a pregnancy announcement, so surprise! Mikaere’s getting a sibling later in the year 🙂