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#nonketotichyperglycinemia

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Lunching with these beauties today. It's unreal how grateful I am that we're not in hospital right this minute, or hospice. That while things are still a little wobbly with seizures we're still okay to get out for lunches and runs and social visits in between the craziness which is all the therapy/nurse/treatment appointments.

Look at us go, you guys!! We're doing all the things!! #teammikaere #glycineencephalopathy #nonketotichyperglycinemia #takeThatNKH #outsideTheBubble

Today when we woke, I found out three small little NKH bees have passed on. I'm heartbroken, I really am. NKH is taking one of our own every few months. MONTHS, hey. This is not okay, this is absolute rubbish. No one wants to say gbye to their babies. It's so horrifically unfair. ⠀

The shit thing is that I feel like we’re fighting against something as immovable as the tide with Kai - that one day we’ll have to say our own g’bye and just… I can’t even begin to talk about how heavy that makes my heart. How furious. I want to rage, I want to howl because it’s so horrifically horrifically unfair.  And then I think that there are three families right now who are hurting. Three lives that NKH has taken, three beautiful little children that should have grown up. That should have learnt to ride bikes and enjoyed the never ending summers and graduated and travelled and loved and LIVED. ⠀

But they didn’t. Because NKH is horrific.⠀

I hate NKH. I hate it with such a passion. ⠀

I hate even more that the cure is being held back by something as stupid as money. That our children could be given futures if they’d been born to millionaires. Tha gene therapy could be an honest to goodness thing we could do for our kids if there was funding. ⠀

How horrifically unfair.⠀

Today I'm hugging Kai a little closer. The truth is that the more kids pass on, the more anxious I get. The more I google the term 'NKH life expectancy', the more I look into the why's and how's (it looks like it's almost always respiratory, womp). The more I feel like we’re waiting for our turn at that horrific day.⠀

I'm fiercely hopeful an NKH cure will be found soon (c'mon Prof Nick Greene, were rooting for you). I throw myself more and more into fundraising, what else I can do, what other event could we throw?⠀

Please donate, hey. Help us fund a cure. Children just like Kai are dying. They're dying regularly. This is not an abstract someone else’s baby, hey. This is our children. With faces and names. And it's heartbreaking.⠀

Fly high Evelyn, Bradley & Boone. You three were well loved, and will missed fiercely by your NKH family xx⠀


#nkhawareness #nkhcansuckit #nonketoticHyperglycinemia #mor

Kai is becoming very very vocal. It only happens when Kai is well, when everything is under control so even though he's a bit shouty, I am *delighted* to hear his little voice! Even when he's screaming. Most people get quite upset when their babies are very loud, and very upset.

But... we know that sick babies are silent. In intensive care, you could be sitting with your baby and not even realise there were 15 other babies in the same room. Sick babies are silent, and I've spent many hours in Kai's silent company (stupid seizures, stupid coma), so I don't think I'll ever tire of hearing him express himself vocally. Hearing him chat away, it's just the best.
It's the small things, hey? That's what we're appreciating today.
#teammikaere #nonketotichyperglycinemia #glycineencephalopathy #specialneedsbaby

"I'm really getting a hang of this whole head situation!" Z did so good in therapy today 😊😊
#zandersstorynkh #zander #nkh #nonketotichyperglycinemia #epilepsy

When the weather is good we beer garden with good friends, g&ts and more fries than we can eat. Appreciating the good days when we have them.
#specialneeds #terminaldisorders #nonketotichyperglycinemia #glycineencephalopathy #teammikaere

Sundays are meant for hanging in the park. Loving that we have such a fab green space so close.

#londonlife #nonketotichyperglycinemia #teammikaere #enjoyingTheGoodDays

Our first weekend home, we hit a series of milestones. Sam's Mum has been with us this first week to help ease us in, and she's been amazing. Small things, just being helpful and making sure we're fed and clean and have everything we need. I love watching her love on Kai - medical people aside, she's the person beside us to have spent the most time with Kai and he responds so well with her.

When we had to say goodbye, we felt a bit uncertain about how things were going to go. Sam and I managed - we knew we would - but it wasn't smooth sailing. In saying that, this weekend was the first time in forever that it was just us three. Just our little family, and oh. I can't even begin to explain how amazing that was. No medical people checking in, just time for us three. It was shakey, but so so freeing, and so so needed. I revelled in the joy that was the just-us time. I wonder if this is what it's like for other new families all the time?

Kai didn't make it easy for us though. There was a lot of vomit. So so so much vomit. And he pulled his NG tube out. I love seeing his cheeks free of tubes, and I love his determination to yank it out but the necessity and putting it back in is heartbreaking.

I'm glad Sam had the training, because it was on him to put the NG tube back in. We called a friend of ours who lives around the corner just to watch, just in case. She's a paediatrician, and spent some time in Africa developing an infant help program (very familiar with ng tubes). And with a swaddled squawking baby Sam inserted the NG tube like a pro. It was a bit nerve wracking for me, but I'm glad Sam was able to step up for Kai.
While Kai was squawking - we noticed his first tooth come through. I was unprepared for that little toothy peg, but there it was. Small little baby tooth, right there in his mouth. It blows my mind, because I forget that he's growing. I feel like we only just managed to get home, that we've only just got our feet under us before Kai is changing it up again.
Still. Loving being home. Loving being here with him. Fingers crossed we're here for the long haul, hey.
#ngtubebaby #ifhnkh #nonketotichyperglycinemia #glycineencephalopathy #nkh

What a difference a year makes, hey? This time last year we were still waiting for a diagnosis and things were looking grim. Now someone's right this minute chatting away knocking at his bells happy as pie!

Thanks to everyone who has donated already to Kai's Therapy Fund. Oh my days, were so grateful for the support. You guys are the best, and we love you!! (Donation #linkinbio👆 if you wanted to donate a small something?) #specialneedsisexpensive #allthetherapy #nonketotichyperglycinemia #glycineencephalopathy #luckyhescute #teammikaere #fundraising #parenting #nicubaby #nicu #nicugraduate #nicuawarenessmonth

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What a difference a year makes, hey? This time last year we were still waiting for a diagnosis and things were looking grim. Now someone's right this minute chatting away knocking at his bells happy as pie!

Thanks to everyone who has donated already to Kai's Therapy Fund. Oh my days, were so grateful for the support. You guys are the best, and we love you!! (Donation #linkinbio👆 if you wanted to donate a small something?) #specialneedsisexpensive #allthetherapy #nonketotichyperglycinemia #glycineencephalopathy #luckyhescute #teammikaere #fundraising #parenting #nicubaby #nicu #nicugraduate #nicuawarenessmonth

New Post on the Blog: On Saturday we had Kai’s first birthday party. It was amazing!! We went with a superhero theme, it seemed appropriate. We invited a few friends down to our local cafe and had decorations and bunting. And cake. SO much cake.⠀

Kai, unfortunately, had a bit of a down day and ended up sleeping through his party, but we had a great time. There were lots of people we adore and hadn’t seen in a while. ⠀

Thanks to everyone who came, we had a lovely time. I’m glad we managed to celebrate. ⠀

Here’s the other thing. This birthday marks a year of fundraising for an NKH Cure. We support Joseph’s Goal and Prof. Nick Greene with UCL. Of course we do. They’re the closest to a cure. Fundraising for a cure seemed like the best way forward for Kai’s long term future.⠀

Except that now… now that Kai is much older his disabilities are more pronounced. He needs more support, and to be frank: the NHS is sorely underfunded.⠀ ⠀
Recently we came across two treatments we think will help Kai – they’ve both already had outstanding results in other children with NKH. We hope that with them, Kai will have a chance at hitting some of those developmental milestones we’ve missed (like head holding, sitting, and if we’re really getting our hopes up, walking and talking).⠀

Two treatments we think would be game-changing for Kai that we can’t afford to pay for ourselves. How heartbreaking is that? That there are things that could help Kai that are denied to him because of something stupid like money?⠀

And so for us it makes sense to stop, temporarily, fundraising for Joseph’s Goal and to start fundraising directly for Kai and what Kai needs.⠀

We know we’re asking a lot, but we can’t afford these treatments out of pocket. It’s especially hard to see other children having success with these treatments and not be able to do the same for Kai.⠀

But if you’re able: please donate something for Kai’s Birthday. Anything would be very much appreciated.⠀

https://www.justgiving.com/crowdfunding/help-for-kai⠀

(donation #linkinprofile )x⠀


#nkhawareness #nkhcansuckit #nkhfighter #specialNeedsParents #nonketoticHyperglycinemia #glycineencephalopathy #raredisease #specia

We're setting up for a small celebration tomorrow to ring in Kai's first birthday, and as part of the candy bar we're doing a shout out to @josephsgoal - because who doesn't love chocolate footballs?

#parenting #specialneeds #nkhcharity #nkhawareness #nkhcansuckit #nonketotichyperglycinemia #glycineencephalopathy #firstparty #yayCandyBar #literallyCouldntHelpMyself

New post on the blog. So, we got the letter in the mail today. There’s no surprise, Sam does indeed carry the c.1108C>A p.(Gln370Lys) mutation and I carry the c.395C>T p.(Ser132Leu) mutation. As expected. ⠀

To read it what it means to us, and the rabbit hole we go down from here, read the post, #linkinprofile👆🏻 ⠀ ⠀
#nkcanSUCKIT #geneticMutationsCanAlsoSuckIt #nkhawareness #nkhfighter #specialNeedsParents #nonketoticHyperglycinemia #glycineencephalopathy #raredisease #specialneedsbaby #genetics #moreMoneyMoreResearch #scienceWillWin #teamMikaere

New Post on the Blog! Today, Kai turns one. This feels overwhelming, and I’m a bit teary. ⠀

I wish I'd known. I wish I'd known that we'd make it a year. I wish I'd known when we were in intensive care, and the neurologist was telling us Kai's brain was shutting down and there was nothing they could do. I wish I'd known all those times I cried over his incubator. In those first few weeks where I was desperate to hold him, when we were willing him to breathe, when we watched them take pints and pints of blood, pumping back in a cocktail of 'this might help' drugs.⠀

I wish I'd known to expect more than the fear. That someone could have sat us down and said sure, there will be fear and grief and hardship, but there will also be a lot of love, and hope and smiles. And that in the good moments (because there will be good moments) your heart will burst with all the love and joy. And it would happen frequently. ⠀

Loads more on the blog (I got super wordy!)! #linkinprofile👆🏻

#nkhawareness #nkhcansuckit #nkhfighter #specialNeedsParents #nonketoticHyperglycinemia #glycineencephalopathy #raredisease #specialneedsbaby #moreMoneyMoreResearch #scienceWillWin #teamMikaere

"Guess what guys?? My broviac is gone and I got a mini button!" #zandersstorynkh #zander #nkh #nonketotichyperglycinemia #epilepsy #tubie #minione

New Post on The Blog! Woah buddy - Kai's Grandparents, Grand Aunts, and Great Great Parents had a Garden Party Fundraiser for Joseph's Goal/NKH Research. ⠀

It was AMAZING! There was all sorts! To see the whole shenanigans (and how much we raised, any guesses?) - check out the post. #linkinprofile👆🏻

#SoMuchRain #IMadeWineBottleLaterns #AndAteWaaaayToMuchCake #YayCake #fundraising #nkhawareness #nkhcansuckit #nkhfighter #specialNeedsParents #nonketoticHyperglycinemia #glycineencephalopathy #raredisease #specialneedsbaby #moreMoneyMoreResearch #scienceWillWin #teamMikaere

I planned to do this last week but got busy so...
Thanks to Hybrid and some lovely people there, we got our NKH tees! All proceeds go to NKH research.

If you are interested, please message me. If you comment, I may miss it. I will get back to you within a week if I still have inventory and will ship within two weeks. I'm changing $5 flat for shipping. $15 tees and $10 onesies. ❤️ First come first serve.
P.S. Sorry for my poorly photoshopped pics. But time is precious!

#nkh #nonketotichyperglycinemia #epilepsy #research #zandersstorynkh #zander #beelievenkh

#Repost from our Episode 7️⃣ guests @teammikaere. Visit our bio link to listen to Kai’s story on iTunes! 📲🎤🎧
・・・
New Post on the Blog! All about how we tried to get Kai's story in the media and failed (super super failed). BUT - most recently we were featured on a podcast with The Baby Nation (@thebabynation) - woo! ⠀

It was a fab time, though listening back was rough (all of the feels, you guys. ALL OF THE FEELS!)⠀

Links for the Blog Post and the Podcast at in the bio.

Love it. Podcasts are the coolest. ⠀

#nkhawareness #nkhcansuckit #nkhfighter #specialNeedsParents #nonketoticHyperglycinemia #glycineencephalopathy #raredisease #specialneedsbaby #moreMoneyMoreResearch #scienceWillWin #teamMikaere

Time to wake up my little bumble ❤️ #nkh #epilepsy #nonketotichyperglycinemia #burtsbeesbaby #zandersstorynkh

New Post on the Blog! All about how we tried to get Kai's story in the media and failed (super super failed). BUT - most recently we were featured on a podcast with The Baby Nation (@thebabynation) - woo! ⠀

It was a fab time, though listening back was rough (all of the feels, you guys. ALL OF THE FEELS!)⠀

Links for the Blog Post and the Podcast at in the bio. ⠀

Love it. Podcasts are the coolest. ⠀

#nkhawareness #nkhcansuckit #nkhfighter #specialNeedsParents #nonketoticHyperglycinemia #glycineencephalopathy #raredisease #specialneedsbaby #moreMoneyMoreResearch #scienceWillWin #teamMikaere

Loving on this guy a bit more this morning. NKH is devastating, hey. Another NKH Bee gained his wings last night. He was only eight. Fly High Anthony, you were loved so fiercely, and will be missed. Xx

#nonketotichyperglycinemia #glycineencephalopathy #terminaldisorders #nkhawareness #nkhfighter #nkhcansuckit

New Post on the blog! Kai has a huge team of people looking out for his medical well being. Do you want to venture a guess at how big his team is?⠀

No, really. Take a guess. Most people have a GP at the very least, so that's at least one. ⠀

What did you guess? 10 medical professionals? 15 medical professionals? What do you think??⠀

Check out the post (#linkinprofile) to see how many he really has! ⠀

#nkhawareness #nkhcansuckit #nkhfighter #specialNeedsParents #nonketoticHyperglycinemia #glycineencephalopathy #raredisease #specialneedsbaby #moreMoneyMoreResearch #scienceWillWin #teamMikaere

No Mama, I know it's well past my bedtime, but now is not the time for sleeping. There is way too much noise making to be done.

This guy! Seriously. Fighting sleep like nobodies business!

#teammikaere #ukmama #specialneedsparenting #tubiebaby #ngtubebaby #nonketotichyperglycinemia #ukparentingblogger #ukmums #parenting

New Post on the Blog! The Walk. Capital T, Capital W. Woah, buddy. It was intense and emotional (if you saw the end shout out videos, you know what I'm talking about). ⠀

Sam's written a write up of how it went down, and oh my DAYS! Emotional doesn't even cover it. We're so proud of him!!⠀

For the low down on the walk (and the secret mission!) check out the post - #linkinprofile👆🏻


#nkhawareness #nkhcansuckit #nkhfighter #specialNeedsParents #nonketoticHyperglycinemia #glycineencephalopathy #raredisease #specialneedsbaby #moreMoneyMoreResearch #scienceWillWin #teamMikaere #livebv

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