Elly Rarg

Kai’s funeral will be at 12:30pm on Wednesday the 21st of August at the St Albans Woodland Burial Grounds in Keysoe, in Bedfordshire (MK44 2JP).

There will be a funeral reception afterwards at the Fox and Hounds, 54 High St, Riseley (MK44 1DT), which is a ten minute drive from the burial ground.

Everyone welcome (including kids), but please let us know if you’re coming, so we can organise numbers/food for the F&H.

Dress code is smart, and dark if you like; but also Elly is wearing a dress with aeroplanes, so you do you.

We’re hoping to stream for those who can’t make it. If you’d like the link, please email Elly: elly.hulance@gmail.com

Again, please no flowers, instead if you could donate in his honour if you feel moved to: https://ift.tt/EClc0KV

Please come ready to share with Elly and Sam a moment of joy you remember with Kai. We’re holding our memories tight and would love to hear yours.

Oh KaiKai, we love you so much.

Kā whati rā ia tāku māhuri tōtara

—-

It’s been a few days and this doesn’t feel real – my entire body viscerally rejects this devastating experience, this truth that hurts, that carves out my core and withers all that I am? I can’t breathe I can’t breathe I can’t breathe (I miss you I miss you I miss you). How do I stop crying? How am I picking out caskets and signing your death certificate and organising your funeral? Worse, how are people planning for after? (As far as I’m concerned, we bury you and then the earth will swallow us all whole, and that’s done. No more after).

Oh my beautiful beautiful boy. How do we honour you? How do we hold this pain (so much pain, so much pain) so you can be free? from Instagram: https://instagr.am/p/C-xsxTAo2xF/

It’s with the heaviest of hearts that Sam and Elly share that our beautiful darling boy, Mikaere Grant Hulance (Kai to all who knew him) has died. We are heartbroken, and we will always love him, and it’s in how we live moving forward that we honour him.

Funeral arrangements to come. Please, no flowers. Instead, please donate in his honour if you feel moved to: https://ift.tt/U9gnBYc

Kua hinga te tōtara i Te Waonuia-a-Tāne.

——-

How is it the earth still turns? That the sun rises and sets and everything else is still moving forward when our beautiful beautiful boy has devastated our hearts with his death? How can others still laugh, and play and work and move, how has the earth not just swallowed us all whole? How is the wind still blowing and the clocks still ticking forward? (How is my heart still beating?)

This devastation I feel has hollowed me. I feel less, I feel like the world is less. How do we go on? I know the answer is in his honour, but I don’t know how to do that right now. I know that we carry this pain so he doesn’t have to, but my HEART.

Fly high my beautiful, beautiful darling boy. We love you so much, and we miss you already. We will always love you – our world is less bright without you. 


For everything we do, to Mikaere, in his honour x from Instagram: https://instagr.am/p/C-tQ0uCofDK/

Our boy is in intensive care. If you have ever considered donating to NKH Research, if you ever needed a reason, here. This is why NKH is so awful. Our kids don’t deserve this, they don’t deserve this pain.

If you’ve ever considered donating, please donate now.
mikaerefoundation.org/donate #linkinBio

#nonketotichyperglycinemia #nkh #nkhawareness #ifhnkh #metabolicdisorder #glycineencephalopathy #teamMikaere #theMikaereFoundation #nkhcansuckit #cure4nkh #nkhResearch #fundraising from Instagram: https://instagr.am/p/C-iQN_dIFco/

Mikaere is sick and it’s heartbreaking. I’m not going to share details because I think he deserves his privacy and dignity, but as a parent, being plunged into a new level of worry and wtf do I DO is awful. I feel like I’m constantly second guessing myself, do I give another dose of this? Or that? What will the consequences be, will it help, or will it not? Do I take him into A&E? He’s already been reviewed and we’ve spoken to all the teams… What would they do in A&E we can’t do at home? What information could they provide that would change the current course of treatment? What are the risks of going in? Would going help? Or would it hinder? Is my response, my decision making being affected by the trauma of past visits, and how do I make sure that any trauma is not effecting my decision making process?

Because this is hard, and gets harder as time goes on. At the heart of it, my boy is in pain and he’s suffering and I hate it, with every single ounce of my being. Worse is that having two other children who just shrug off the same thing, I can see the gap. I can see what NKH has stolen from us and I grieve for my boy. Still. Years and years and years on, it’s still so wildly devastating.

When he’s well and happy living with NKH in our family feels tolerable. It’s not ideal, it’s not what I’d choose, but it feels like we’re making the best of a very bad deal. On days like today when he’s suffering, it feels horrific. I feel helpless, and trying to make clear, rational decisions when he’s so poorly, when it’s all so unclear… it’s hard.

So, I’m here with him, watching him, trying to run through all the things we could do and wait for his presentation to guide me. I do what I always do when I’m struggling: raise money for research. I published another charity book (Where is the Purple Racing Car: French edition) and I’m reviewing the fundraising pack we’re building for the charity and I’ve applied for a handful of grants, and I’m halfway through a grant proposal for a partnership that might help and just… please. Can he please be well and happy? (He’s not well and happy and it makes me sick to my stomach).

NKH is awful. It’s awful it’s awful it’s awful. from Instagram: https://instagr.am/p/C-cQ48BI96n/

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/

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/

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 🤣)

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/

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 💛🐝🥰

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

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 🤣). 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 🤣

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

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:

Justgiving:
https://ift.tt/Gyl6DbL
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#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/