#nonketotichyperglycinemia

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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

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

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

And just like that, after such a good spell, the seizures are back. They look different, having changed their MO, and I didn't identify them as seizures, but the more they happened, the more sure I became.
I've just faced the fifth seizure of the day, and I'm heartbroken. More than heartbroken, that word doesn't even begin to convey my despair, my fear, that sinking feeling you get when you suspect your world is tipping over sideways again. Do the next few days mark the beginning of another stint in intensive care, in hospice? We've only been home eleven days.
We suspect it's because Kai is not tolerating the phenobarbitone. He vomits consistently after each dose. Doesn't matter whether he's on gaviscon, before the feed, after the feed, diluted. I hate pumping his little body full of drugs, I hate when he vomits, he gets so upset, and holding your baby while he screams is horrid. I always want to cry along with him, it's so unfair. So horrific.
It's in such contrast with happy Kai. Sometimes, after a feed with no meds I'll get a glimpse of what it could have been like. With a clean nappy, a full belly post burp, he's positively delightful. He smiles, and coos and makes eye contact. He lights up my whole world. He's happy, and will interact with us.
I love that little version of him, and I'm constantly striving to keep him in his happy place, but it's so fleeting. We give him so many horrid meds. He vomits so frequently. And now the seizures are back.
I just feel battleworn. We're only four and a half months in, and I'm battleworn. The only way I get through today is by hoping tomorrow will be better. That tomorrow there will be less seizures and more smiles.

Please, if there is ever going to be an end to this, it's in a cure. A proper, honest to goodness conditional gene therapy cure.
I know I've asked a kajillion times, but on a day like to day where it's so clear that every moment we have is precious, that every day could turn, I'm going to ask again:

Please donate towards research. Please.
If not via donation, please fundraise.
Just, please help us fund a future for our son.
#nonketotichyperglycinemia #ifhnkh #nkhcansuckit #nkhfighter

Recently, my Dad and Jane came to the UK for a wedding, and they bookended their time with us. I can't even begin to explain how delighted I was that Dad was here. ⠀

When he visited in January, we were in intensive care. Kai was in a seizure coma having a rough time of it. He hadn't opened his eyes, he hadn't cried, he was floppy like a rag doll.It was a tough time. We even had a 'just in case' baptism in our little intensive care bay. ⠀

That visit was a world away from this one, where Kai was awake and vocal and a very very very different baby. And to see the two of them together? To watch my Dad tickle Kai's feet and to hear Kai sqwak in response? Heartwarming. To watch Dad play with Kai, have cuddles and laugh with him and generally just delighting in Kai?⠀

I loved it. Loved loved loved it.⠀

More on the blog, but in short: If someone could event a teleporter and set the price at affordable, that would be brilliant. ⠀


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

Help us fund a cure for NKH by listening to brass bands + eating pasta! ⠀

We’ve been trying to find our feet with fundraising. It turns out that fundraising is HARD. We know can’t continue to ask you wonderful folk of #teamMikaere to keep donating. So many of you have donated already, and we’re so so grateful. So genuinely grateful I want to hug all of you.⠀

But every time we talk to our researchers, we get a similar message: there’s no evidence, because there’s no research. There's no research because there’s no funding. It’s difficult to hear that, that between me and my son’s future is something as stupid as money. And as much as I’d like to be on Ellen, showing off Kai’s cute face, or coming up with the next act of viral craziness (the most marshmallows in your mouth challenge? The mannequin breaks into the running man challenge?) I really don’t think it’s going to happen. ⠀

So. We’re trying events, things people can come to that they’d pay for anyway. Here is what we currently have:⠀
⠀ ⠀

THE FULHAM BRASS BAND CONCERT⠀
When: Sunday 21st May, 3pm - 5pm (this weekend!)⠀
Where: St Etheldreda with St Clement, Doneraile St SW6 6EL London⠀
Tickets: £11 ⠀

They’re doing a bake sale and a collection for Joesph’s Goal. We’re very very excited. ⠀

It turns out two friends at our NCT group play in the The Fulham Brass Band, and they do charity concerts. This particular concert has James Fountain - the principal trumpet of the Royal Philharmonic Orchestra. Very oh la!⠀ ⠀
We’ll be there, if you’re in London - fancy joining us?⠀ ⠀

THE COOKING SCHOOL #TEAMMIKAERE PASTA CLASS⠀
When: Friday 23 June, 7pm - 10pm⠀
Where: 3 Enterprise Way, Wandsworth, SW18 1FZ⠀
Tickets: £75 (almost half goes to charity!)⠀

We’ve managed to snag a class - dinner (Pear and Ricotta Ravioli with Beurre Noisette, Rocket Leaves and Shaved Parmesan), dessert (Lemon Posset with Rosemary Thins + Raspberry Coulis) and Bottomless wine (!!!!) included. ⠀

Ticket details on the blog. Please come! ⠀

#nkhawareness #nkhcansuckit #fundraising #nonketoticHyperglycinemia #moreMoneyMoreResearch

We're gearing up to go home. I've taken on the meds and bulk of the care. Kai sleeps with us now, instead of under the watchful eye of the nurses, which is nice. I feel a bit like I'm getting my baby 'back'. The nurses pop their heads in to see if we're fine, and if we are they leave us to it. It's pretty refreshing, actually, to be the main carer for Kai, like I'm meant to be.

In saying that, it's not a walk in the park and I'm grateful the nurses are close by if we need them.
More on the blog! #linkinprofile

#glycineencephalopathy #nkh #nkhcansuckit #nkhfighter #nkhawareness #ifhnkh #nonketotichyperglycinemia

MOST RECENT

Recently, my Dad and Jane came to the UK for a wedding, and they bookended their time with us. I can't even begin to explain how delighted I was that Dad was here. ⠀

When he visited in January, we were in intensive care. Kai was in a seizure coma having a rough time of it. He hadn't opened his eyes, he hadn't cried, he was floppy like a rag doll.It was a tough time. We even had a 'just in case' baptism in our little intensive care bay. ⠀

That visit was a world away from this one, where Kai was awake and vocal and a very very very different baby. And to see the two of them together? To watch my Dad tickle Kai's feet and to hear Kai sqwak in response? Heartwarming. To watch Dad play with Kai, have cuddles and laugh with him and generally just delighting in Kai?⠀

I loved it. Loved loved loved it.⠀

More on the blog, but in short: If someone could event a teleporter and set the price at affordable, that would be brilliant. ⠀


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

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

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

I'm exhausted. I've been up since 5am when I did the morning feed, and despite it going on 1am now, I'm finding it difficult to go to bed.⠀

We have a night nurse. And she is lovely. A well experienced lady who sings wheels on the bus out of tune, and strokes Kai's forehead and fusses over his blankets, making sure he is comfortable and settled. She is lovely, and completely competent. Over qualified, even. With the credentials at this hospital, in that intensive care, part of this other specialist community team. And a mum. She's over over qualified.⠀

And yet, I can't help but hover, finding another job or something a rather to keep me in the same room with them. This is meant to be our down time - time for me and Sam to do things like shower and sleep and hang out - and I have no idea what it is that has my heart all in my throat at the thought of leaving Kai with his nurse. Trusting him with someone who is not Sam or me. ⠀

It's tough. I both want the space (and the sleep!) and I want to be there with Kai. I essentially want my cake and I want to eat it too. ⠀

It's hard, trusting Kai to other people. I know that I know Kai best. Because of that, his care is best when he's with me. Trusting Kai to someone not Sam or I feels like leaving Kai to second best. ⠀

More on the Blog!⠀

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

There is a five minute spiel I do at fundraisers. About Kai, and NKH and how horrible it is, the research and how we have hope and please dig deep.⠀

If you've been to one of our fundraising events you would have heard either me or sam do it.⠀

Here's the thing though... I've done it enough times to know it off by heart, and I still, every single time, get all choked up when I get to the bit where Kai's disorder is terminal and life limiting.⠀

It's tough, having to tell strangers over and over again that one day NKH will take my baby from me. That one day, sooner than I'd like Kai will die. My voice cracks and my eyes well up and my breath is shaky. I often have to take a moment, but then I seize on the next line (which is always 'but we have hope') and then move forward through the talk.⠀

And as I go through this little spiel I feel horrid. I feel guilty. And I hate it.⠀

More on the blog!⠀
#nkhawareness #nkhcansuckit #nkhfighter #specialNeedsParents #nonketoticHyperglycinemia #glycineencephalopathy #raredisease #specialneedsbaby #moreMoneyMoreResearch #scienceWillWin #teamMikaere #fundraising #WereDoingIt

The better that Kai is, the more expressive he is. The more chatty and vocal, the more awake and aware. Which means he’s also very quick to let you know if he’s unhappy, and sometimes - the lip comes out. Sam is always telling him to ‘put that lip away’ but honestly, it makes me laugh so hard when I see it. ⠀

#nkhawareness #nkhcansuckit #nkhfighter #specialNeedsParents #nonketoticHyperglycinemia #glycineencephalopathy #raredisease #specialneedsbaby #moreMoneyMoreResearch #sickBabiesDontCry #putThatLipAway #soSad

Kai's doing quite well. He's needing o2 less and less and is becoming more chatty and active. It's so nice to see him like this, and I'm tentatively easing into enjoying this time with him.⠀

We're trying more solids (more for sensory experience than nutrition) which I think Kai enjoys. We're also trying to socialise a bit more while Kai is doing well. We've had more dinners and out for lunches and long walks. We even spent an afternoon in a beer garden with a friend. It was so delightful, sun, live music, good company, good food and a cheeky g&t. Kai was so well behaved and it just, it felt so easy. So normal. ⠀

Is this what it's like for neuro-typical parents? It's delightful. Cross your fingers that we get more time like this with our little guy.⠀


#nkhawareness #nkhcansuckit #nkhfighter #specialNeedsParents #nonketoticHyperglycinemia #glycineencephalopathy #raredisease #specialneedsbaby #moreMoneyMoreResearch #yayGin #beerGardensAreTheBest #teammikaere

Oh my days. Oh my days!! I'm just back from the most amazing fundraiser. The Fulham Brass Band often plays charity concerts and we were lucky to be a beneficiary, fundraising for Joseph's Goal. We had so many people come. So many friends that I haven't seen in forever. Friends who have since had babies, friends who visited us in Hospice, friends from overseas, NCT friends, friends who we met in NICU who are now (hurrah!!) home! ⠀

We've been in a bit of a bubble lately, being in hospital and what not. So to see so many of my favourites in one place was just... I felt so loved. That there were so many people on our team, it was amazing. So many faces, so many friends. I was (almost) gutted we were at a concert, instead of somewhere to hang out and chat.⠀

Almost, though. It was an AMAZING concert. Turns out brass bands are well fun, and l super enjoyed the music. Some of it was shockingly familiar, and I was amazed at how much I recognised. But also just how fun it was. I was genuinely delighted to be there.⠀

About partway through I did a talk about Kai... I have no problem with public speaking. When I was at uni I did talks to thousands of school girls, trying to encourage women into science. Talking about science is pretty easy. Talking about your terminal ill baby was emotional. I cried, in front of a hall full of people. But I got the gist across, I think. ⠀

Then there were cakes at the interval - oh my days. So much cake. SO MUCH CAKE. It was well delicious. We raised over £900 between the cake sale and the retiring collection. I can't even begin to explain how grateful we are, how much hope this gives us and how much momentum, spurring us on to the next fundraising event (come to a wine tasting with us! Sat 12 August it will be amaze!)⠀

To everyone who came, who reached out to say they couldn't come, who donated in their absence, who ate cake or donated cakes for the bake sale... thank you. Thank you thank you thank you. You guys are truly amazing! ⠀

Brass Bands, hey? Love them. What a fab afternoon.⠀

#nkhawareness #nkhcansuckit #nkhfighter #specialNeedsParents #nonketoticHyperglycinemia #moreMoneyMoreResearch #fundingacure #teammikaere

As we've been discharged (thank goodness for that, it's such a relief to be home after that horror of a stay), we've been given an oxygen stash - several tanks. For kai's comfort. We don't have an o2 monitor (they run into the thousands, can you believe it?! I'm looking at a few different options, namely owlet and neebo) so it's a bit tricky to tell when Kai needs it. ⠀

We look for the tracheal tug, or an intercostal pull. Nostril flareing, or a head bob. Anything that shows he's working hard to breathe. We reposition him to help his airway, and if we're even slightly concerned we pull out the tank.⠀

Kai hates the nasal cannula. If you don't occupy his hands he'll have it off before you can even turn on the O2. I guess this is just another thing we manage. We have a whole pile of equipment: apnea monitors, suction machines and now o2 tanks. Add that to our mini pharmacy and emergency toolbox full of controlled drugs and IV gear, we're essentially a more comfortable ward already.⠀

Still, I guess this is just how we roll now. ⠀


#nkhawareness #nkhcansuckit #nkhfighter #specialNeedsParents #nonketoticHyperglycinemia #glycineencephalopathy #raredisease #specialneedsbaby #moreMoneyMoreResearch #wooOutOfHospital!! #hospitalAtHome #hadToUpdateOurHouseInsurance #teammikaere

As if this hospital stay couldn't get worse. Today a paediatric matron I hadn't met before tried to bully me into doing what she wanted me to, despite my very clear concerns. I'm not imagining the bullying either, hey. When it was clear I wasn't going to budge she did two things, both which were so disrespectful I can't even believe they happened.⠀

First, she asked when Sam would be around, so she could 'talk to someone with sense.' Wtf. You can't defer to a partner because you don't get your way. I pretty much told her that line would do her no good. Sam supports the decisions I make with Kai when he can't be there. I rely on this trust, and I told her so. There was absolutely no way she was putting a wedge between Sam and I. ⠀

Second, when it was clear I wasn’t budging while my concerns weren’t being met, she told me I was "irrational" and threatened to call social services. She then said she didn't want to, but that I was "forcing her into it", and it would mean "so much trouble" for me.⠀

What. The. Fuck.⠀

Loads more on the blog.⠀


#nkhawareness #nkhcansuckit #nkhfighter #specialNeedsParents #nonketoticHyperglycinemia #glycineencephalopathy #raredisease #specialneedsbaby #moreMoneyMoreResearch #whatTheHell #powerImbalance #threatsAndBullyingDoNotBelongInTheHospital #trustFail #teammikaere

Missing my baby girl bad this morning. I will never be whole without my baby...how I wish I could hold her and kiss her and feel her sweet tiny nose on my cheek again...she should be here with us, playing with her siblings and giving mommy and daddy loves... R.I.P. my sweet Angel mommy loves and misses you terribly.
5/13/11 - 5/24/11 😔😢
................................................................
#infantloss
#NKH
#nonketotichyperglycinemia

Gaaaaaaaaaaaah. I'm so sleep deprived. I did the midnight meds, was woken every half hour till 4am when Kai's o2 dipped before they gave oxygen and then awake at 6am for more meds. ⠀

Not the best state to be blindsided about end of life care directives for Kai.⠀

Which is to say I was asked, in my super sleep deprived state, without Sam, to reconsider our end of life plan to include, in this instance, invasive ventilation if Kai needs it. That right there opens a whole can of worms. We spent so many hours and tears and hand wringing to agree on our end of life care directive. We talked about quality of death and quality of life. For us, for Kai. And Sam and I together agreed no ventilation. No vent, no c-pap. ⠀

If it's stupid rhinovirus that is going to take Kai, and not NKH, do we still let him go? Or do we fight it with a vent, and hope it doesn't do too much damage to Kai's lungs ad bring it the end about later?  When is the best time to say gbye? To even consider it? I hate that it’s a thing. I hate that we have an end of care directive at all. I hate that I’m being asked to think about end of life with a run of the mill every day *cold*. ⠀

More on the blog.⠀


#nkhawareness #nkhcansuckit #nkhfighter #specialNeedsParents #nonketoticHyperglycinemia #glycineencephalopathy #raredisease #specialneedsbaby #moreMoneyMoreResearch #endOfLife #terminalBaby #ifhnkh #ifhnkhSOhard #teammikaere

Kai has Rhinovirus. Which is to say that Kai has a cold. Which I think would be completely fine in a Neuro typical child... in my little NKH baby it means a&e visits (two so far), an increase in nurse visits (three in the last two days) and a hospital stay. I have no idea where he caught it. We don’t have people over who have even the remotest sniffle. We avoid public transport, we’re rarely out in public. ⠀

But our dr said it could have been anything. Rhinovirus is an airborne virus. Someone in our building could have coughed down our hallway, or passing someone as we crossed the road. Any innocuous little thing.⠀

But for Kai, it means we’re back in hospital. I have not missed the hospital. Not even a little bit. Being away from Sam, the dingy rooms, attemoting sleep on a horrid cross between a chair and a bench. Politely fighting with the nurses and doctors... I don't have The Fear while we're here. Kai isn't having any seizures (thank goodness) and to be fair, apart from the occasional dip in his o2 stats and the added effort he's working to breathe, he's just got a cold. ⠀

However, the on duty gp, the peds reg, and a whole swath of nurses think 'it would be best' if we were in hospital 'just in case'. Preventative just in case-ness because of all the maybes is huge. We're in hospital, because maybe the Rhinovirus might get worse. Because maybe breathing this hard will tire Kai out too much. Kai is now on antibiotics because maybe, he might get a secondary chest infection (same as the last two non-existent chest infections Kai didn't get. Possibly because of the antibiotics. Possibly because he never would have, who knows?). ⠀

I am sleep deprived, having to do all the meds without sam around for respite, not sleeping because of the stats alarm freaking out when Kai kicks and the nurses who want to do obs while Kai's asleep (waking us both) on the hour every hour. ⠀

I hate being in hospital. It's rubbish.⠀


#nkhawareness #nkhcansuckit #nkhfighter #specialNeedsParents #nonketoticHyperglycinemia #glycineencephalopathy #raredisease #specialneedsbaby #sickBabyIsSick #rareDisorder #beingInHospitalSucks

Having a fab time at the Piccolo/Boots/Buggyfit picnic. So lucky to have met so many ladies, and grateful at everyone's generosity - feeling very lucky that today's proceeds are going towards #teammikaere and Josephs Goal. Love it.

@mylittlepiccolo @bootsuk #buggyfitwandsworth #fundraisingForNKHCure #nkh #nonketotichyperglycinemia #glycineencephalopathy #myNCTcrewIsTheBest

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