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NKH Community

Feb 07
0

On the NKH Community

By | #teammikaere | No Comments

The thing with NKH being so rare is that we don’t get to hang out that much. There was a group hang out in the UK up north towards the end of last year, which was beautiful and so emotionally out there. It was a delight to see everyone (I even got cuddles with some of the other kids, which was such a privilege! Antonia, my heart!) but also – I felt the gaps. The kids I missed and were still grieving.

Still, we chatted and caught up and cheered the milestones and discussed meds and therapy and equipment. We talked about what people were struggling with and had some quiet moments with tears.  There was also the unexpected delight that I was in a whole room of people who knew how to look after Mikaere. Do you know how rare that is? Being able to pop to the loo, or have a conversation without being hyper vigilant, because there are at least three other people also hanging out nearby?

There was also a video group chat last month, organised by Kristen (from NKH Crusaders).  I was the only one from the UK who called in, but honestly – it was so nice to chat and talk and just – be with people who understand.

In both cases, the call + the meet up, it such an emotional balm. Because they were a safe places,  I could ask those questions I’m wrangling with.

Like – seriously. How do you deal with grief and loss? How are we meant to SURVIVE this?! There are parents who have 7, 10, 15 YEARS of living with NKH under their belts – HOW ARE THEY DOING THAT?! Because honestly, that our current life might last that long seems overwhelming and impossible. That Mikaere might die, and we won’t reach that long is downright inconceivable.

The notes I took after both are disjointed and all over the place: “Focus on the good, focus on the day to day.” and “The stress doesn’t go away. The same old same old, the story doesn’t change, but when our day to day is still a challenge, that’s hard. “ or “It’s hard, there’s always loss. Grief is devastating. “ and  “We still have the thoughts, the negative fears, and then the hope. The hope lives everyday.”

And the thing is – all those notes are high level, it-is-what-it-is type statements. They’re living the same life we are, with the hard and the grief. What I’m struggling with is that I don’t think there is anything I can do to relieve the pressure of palliative, special needs life.  I think we feel the pain, and onwards we go because there is no other choice. There is no way out but through it. We love our children, and our children have NKH and it is what it is.

Maybe that’s my problem. I’m looking for a fix, I’m looking for a way to relieve this discomfort, this phase of life. Because thats what we’re taught, right? If you are unhappy with a facet of your life, it’s up to you to make change. It’s up to you to learn more, do more, make change to better yourself. Pull yourself up by your bootstraps, work your way upwards. Do the work: be in a better position. We reward that kind of ‘go-get-em’ stereotype.

But what if there isn’t a way to ‘fix’ the discomfort? What if the end goal isn’t change and growth, but to endure?

Even typing that makes me uncomfortable. It makes me squirm, because I don’t want to live in perpetually in grief. I don’t want to endure the stress of the special needs life, or the stress of my baby dying. Would it feel less awful if I stopped trying to fix the unfixable?

But, in the same vein, I don’t know how to accept the unacceptable.

It was easier to manage when the conversation moved on to research (apparently mice in sterile areas are getting infections they shouldn’t?) and then onto fundraising. I feel like I was talking to the pros of NKH fundraising. We do what we can (you know we’re branching out a bit more now we’re doing things like the hair shaving + the NKH Chicken Nugget Challenge).

To be honest, with each event I feel if we can raise £100, £500, £1000 pounds, every single bits helps. Every single pound makes me feel like doing I’m something, helping change our lot towards something positive. It’s not the $20k fundraisers some of the others are doing (how do they do that?!), but we’re doing the best we can. The thing is, fundraising makes me feel like we’re moving forward towards something. We’re making a difference. If I can raise £5 – that’s everything.

So yes, here’s to wonderful company with our tribe. Oh NKH community – we love you, and we’re so grateful for you. It’s such a comfort to know we’re not alone. That we’re not the only ones thinking the hard thoughts and feeling the fears. <3

Left to right:
Daisy’s Dairy with NKH, Team Mikaere, Joesph’s Goal, Jack’s Journey + the amazing Doms!
This isn’t everyone who came, but only the segment where some of us managed to line up.

May 02
0

NKH Awareness Day – Help us cure NKH

By | #teammikaere | No Comments

It’s NKH Awareness Day today. I’ve been posting all week on facebook + instagram about NKH. Facts and trivia (as much as rare and terminal metabolic disorders can have trivia).

Here’s my ask: Instead of your usual flat white, please swap your coffee today for a donation. Please donate. Please donate. £3. £5. £15.

If donations aren’t your thing, please buy an Eva book (all royalties go to Joseph’s Goal). Please change your amazon smile charity of choice to Joseph’s Goal. Please change your profile picture on facebook to the NKH frame. Please share this post.

Today is the day, where once a year we as an NKH community make a big push. Our lives are hard – you know this. Not every family has the means or resources or support to fundraise, and so most families ask once a year, on this day.

Here’s what I can tell you. Your funds are making a difference. In the last year, there has:

  • Been the creation of zebra fish, mouse + worm NKH models. This is HUGE. Researchers can use these models to better understand how NKH works, at a much faster rate.
  • There has been progress in understanding how NKH works (in that it’s not *just* high glycine that causes issues, but also all the metabolic pathways that need molecules from the broken glycine system).
  • There has been progress in narrowing down which currently approved FDA drugs might work as a chaperone for NKH (this is also HUGE).
  • There has been signs that gene replacement therapy can be successful in mice (this is also SO HUGE, this is a CURE)
  • There has been research into replicating NKH into an algorithm for diagnostic use, which is HUGE and AMAZING and has the potential to help so many families.

There is more detail and more information that I can’t share, as it’s all unpublished and I’m being intentionally vague, but I want to share that progress is being made in NKH research. It’s progress that’s being funded by you.

For every £5 you’ve donated to Margot’s Marathon or Katy’s Run, or for every wine you’ve bought at a wine tasting, for every BV person who is doing Tough Mudder – you GUYS! You are paying for real research, real research that is underfunded, real research that has the potential to improve children’s lives dramatically.

So please donate today. Please go out and tell someone about NKH. Tell them about Mikaere. Organise a fundraiser in your office, a bake off, a poker match, a fun run. The stakes are small, and every single donation helps. Every single donation is funding research that will change lives.

Happy NKH Awareness Day. Thank you for being in our corner. We love you.

Apr 30
0

On moving between fear and loss

By | #teammikaere | No Comments

In the NKH Community there’s a death bandwagon that happens after a family announce their angel has gained their wings. Hundreds of messages are sent to the family. Publicly every NKH page has an announcement, with a picture. It takes over facebook, really. Hundreds of comments are left for the family, and hundreds of comments are sent to the people who posted about the community loss. They have prayers, and are sorry for all the losses and are sending so much love (I’ve said those platitudes too, no judgement here).

I’m not sure how I feel about this bandwagon – this giant flood of not so comforting posts. I’m torn.

I’ve been that poster. I’ve posted about more children passing than I would like too. I said I was devastated, and heartbroken and struggling. But truth is for most of the children I’ve posted about – I’d never met that child. I’d known them through the community, through the posts that their parents made. The pictures they put up. The messages they sent. Halle Mae. Kaleb. Mayanak. Cathryn. Gregory. Siem.

I say their names to remember them. They’re important, and they were so loved and will be fiercely missed.

But truth is, I never met them. I don’t have relationships with their parents. The grief of their parents I imagine is huge and very much theirs. But I don’t know them and I can’t know for sure. My grief? I didn’t know it at the time but my grief is fear that it will happen to my child. I posted about these children in such a blithe manner. I really did. I had feelings and I took to the internet (I still am, clearly).

But now I’ve had tiny insight to the other side. Alexander, a boy I knew in real life outside of the internet and met, several times in the last two years died. I adore his Mama, and we’d send messages and do visits and invite each other to the few social gatherings we arranged each year. We’re on each others Christmas Card Lists. I knew he was ill and visited when I could. I knew when it was days and couldn’t visit and it broke me. They graciously let us know when he’d gained his wings, and oh. I had a whole lot of complex feelings, and I felt so strongly for his parents. I struggled, and thought of him constantly.

It was raw, this grief. Because this grief wasn’t about my son, it wasn’t about how I felt about NKH, it wasn’t a fear that one day NKH will take Mikaere. This grief was about Alexander, the dent he’d made in our lives and the hole that exists where he was. I was feeling his loss, specifically. His loss, and such compassion and love for his parents and their loss.

And after his parents let the world know and the memorial posts came flooding in I wanted to tell everyone to shut up. I didn’t, of course. They have grief and feelings and love and none of it was malicious and they have every right to post and make videos and share their grief and they should absolutely do that.

After some gentle examination I worked how I was upset because I could see the difference in my posts. The difference between grief and my fear for Mikaere, and grief that’s because I feel the loss for Alexander specifically. I wanted to say the later feels more genuine, I don’t think that’s true. It’s grief. Complex and unwieldy. I don’t know if that difference even matters. My grief is all over the place, and I’m trying to think and feel my way through it.

I’m struggling. I don’t know how to feel about it. But I do know that I want you to know about it. Not my grief and my feelings but I want to talk about grief. I wish there was more open, genuine talk about grief and death. I can’t help but feel that if we as a society were more open to grief and death, and if we were okay to sit with the uncomfortable together for one hot minute without trying to shy away or fix the unfixable the burden might be less. That we might be able to sit together to remember the people who are important to us, that we could openly feel and say how grief is complex. How death is unfair and brutal and a relief and grace and there is anger and pain and love and hurt and it’s all mixed in together. That we can love and miss and grieve openly without someone telling us to pull it together, or hide it away.

And I get how crazy that is, because here I am trying desperately (and openly) trying to come to terms with my grief over and over and over. In one post after another. I’m trying to be open to feeling what I feel around grief and death. Right now it feels so wrong, and hurts and it’s heavy and huge. I can’t help but think there must be some other way (or rather, that there must be some better way forward for managing those feelings). That there is a way to have a better and healthier relationship with life, illness and death.

We’ll see. I’m sure there will be more posts on grief.

Nov 21
0

On Special Feeding Onsies

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It seems like a weird thing to follow up with after that last post, but I want to talk about clothes for a minute. Kai spends 90% of his time on his back. You spend most of your time upright. Clothes, generally are designed for upright wear.

When Kai wears a tshirt, or a jumper it slides up and exposes his button. The danger with this is giving him easy access increases the chances of him pulling out his button (not ideal). So he wears onsies which have poppers at the bottom, so they can’t ride up. But most onsies for kids don’t have belly access. Which means we typically have to undress him to feed him, and have the feeding extension come out of his pant leg (not ideal).

So we buy special feeding-friendly onsies. The ones we get from M&S are £6 a pop. It frustrates me that for the same price you can get a bulk pack of onsies with no button access. It frustrates me that M&S sell clothing for disabled kids, but won’t put a changing places facility (a safe disabled toilet for those that can’t self transfer) in their stores (but neurotypical people – hey, they’ve got a whole bunch of toilets for you. Wouldn’t you be mad if a store like M&S wouldn’t provide something as basic as toilets?)

It frustrates me that we have to source fancy feeding tube friendly clothes for my son. I can’t just go into the nearest store and pick something cute up. It’s never that easy. And because there is such a huge demand for feeding tube friendly clothes, so many places are out of stock. No kidding, last time I found a place that has onsies in stock I bought several in the two sizes up, just to avoid the stress of it.

This is just another thing to think about, another added difficulty. Sad face.

Special needs Mum – share with me your favourite feeding tube friendly clothes places. Help me find the good stuff.

Update: I saw a post from another NKH Mum who shared BUTTON HOLES as a tip! If I can figure out how to put button holes in Kai’s onsies, I won’t need to buy ridiculously expensive onsies!

Nov 19
0

I’m still pondering grief

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Death is natural. It’s as natural as living. We all die, we all know someone whose died and we all will die. One day. I’m mulling over death, and grief. Forever and always, I think. Is our grief compounded because we don’t live in villages anymore, and we don’t see death in our day to day? We hide away death, we have a funeral that lasts no time at all, we eat little sandwiches and say “I’m so sorry for your loss”. And then we grieve in private, smushing down those feelings we have as we try push through as if we’re fine? Untouched?

I wondered if people who work in funeral homes, doctors in the special care units, nurses in hospice, who deal with death on a regular basis have a healthier grief management system. Do they have a healthier emotional grieving process because they’re exposed to so much more grief? (I asked… I don’t think they do. The several people I asked said it was hard, but it wasn’t their personal pain. Plus they felt like they were helping people, making a difference. I guess having a virtuous purpose relieves some of that emotional weight).

As you can see I’m trying desperately to wrap my head and heart around death, considering we’re surrounded by it. Death is happening frequently to kids we know and love.

If death is natural, why do we fight feeling grief? Do I need to fight grief? Do I feel more grief, considering it’s children who are dying? Children we work so intensely hard to keep alive? If they lived longer, would I feel as hard done by? If they lived fuller lives, if they were less disabled? As horrid as it is, when an adult is sick, or has passed in my head I think, as an adult they had the opportunity to live. They traveled or loved or did whatever it is they wanted to do – they lived. They had time, they had years to fill with life. Our kids don’t have the same opportunities.

Is living and loving and having years and years before you die more natural? I think we have the expectation that that’s the order of how things are meant to go. Does that make it more natural though?

It hard to come to peace with loss. Loss is unavoidable, we’re attached to people and things and outcomes and expectations. I feel like grief is the weighted opposite of love. That the love that I have directly influences the grief I have… but if love is a natural as breathing and we feel such deep depths of love for our children, is grief natural too?

My question, I guess, is how do I survive this? How do I protect my heart from all the grief? How do I do that while still being open and part of the NKH community, while still loving all those other little terminal children? And if I’m open, if I’m vulnerable, how do I survive all the losses? The losses that keep coming?

I don’t have answers. I’m feeling what I’m feeling. I’m struggling, hey. The grief, it’s a real thing. Holding my boy a bit tighter today.

Nov 05
0

On normalising death

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There are a few NKH kids right now who are struggling. Who are at home and ill. Who are in hospital on the ward. Who are in hospice, on what the doctors say is towards the end of their lives. It’s hard, being in a virtual community, physically so far away knowing these families are hurting, that these kids are suffering.

There are also many children who have fought their fight with NKH, who have gained their angel wings and are no longer suffering. Their families are still grieving, though. Still hurting.

And I say all these things, but I don’t have words for how deep the suffering is. How truly intense and horrific it is. I don’t have words for that kind of anguish.

I struggle. I don’t have words and I think this is all coming out wrong – how do I talk about this? How do I talk about the tears and the emotions just below the surface? How I’m constantly grappling with how I feel, with grief. Is it a relief for all the children who have passed? Will it be a relief for the children who are suffering right now, considering how much pain and hurt there has been in their lives? Is there relief for their families? Will there one day be relief for us?

Because that’s the thing, I can’t comprehend Mikaere dying. I can’t. But he will, one day, because NKH is terminal.  I don’t want death to visit us. I don’t want death to visit any of the families that are waiting for it right now. I don’t want the curtain of grief to envelop any of our NKH families. I just don’t.

And I feel powerless to help. The families who children have passed, the families that are struggling.  I don’t feel I can bring comfort to them. I don’t know how to support them. I send messages to let them know we’re thinking of them (and I am, all day every day) but it feels… inconsequential. I feel powerless to help our little family, and the endless waiting and fear for the terminal end.

There have been a few times we’ve waited for the news. A handful of times we’ve sat, anxiously waiting for that call, to hear when another child gained their angel wings. We’d send love and thoughts and cry. We’d talk about organ failure and seizures and that respiratory arrest is more likely to happen before cardiac arrest. We talk about the dignified death bill, and slower than slow breathing rates. We’re normalising the lead up to death.

I hate that this kind of conversation is normal for us now. That we as parents fight so hard to keep our children happy and healthy, and that we’re powerless in the end to stop the pain and suffering that comes with NKH.

I hate that our days with our kids are tinged with the word terminal. That sometime in our future with Mikaere we’ll be in the same position. That we’ll, one day, be watching his organs fail and be witness to his pain and his suffering. To his death. Just like other NKH families are right now.

I’m heartbroken. I’m absolutely heartbroken.

I’m talking about death and dying today because November 2nd, was NKH Remembrance Day. I’m late by a few days, but I want to pause and remember our NKH kids.

I want remember Alexander, the sweetest little sausage there was. I want to to remember Kaleb, and his cheeky grin.

Gregory, and his brother Elijah who is missing him. Halle Mae. And Cathryn. Maynak. Siem.

There are actually many more children. There’s a list. A list of 124 children who have died from NKH whose names should be remembered. There’s a slide show, even. And I started reading the names… there are so many names. Too many names.

And I’m aware that these names, they’re just the ones in our NKH group. They’re just the ones we know about. Other languages, other countries… they have their own groups with children who are dying before their time. They also probably don’t include the families whose babies died before they could even find support in the NKH groups.

Too many names. Too many children.

I don’t want them to be forgotten. I want to remember them, I want their families to know I remember them. To know their names, and their faces. They made marks, they made a difference. They were loved.

I held my little guy a bit closer today while I remember the others. And I think about how all of those children were so loved like I love my little guy. So loved and cherished. NKH can suck it.

 

Sep 21
1

On saying goodbye to Alexander

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Alexander was the very first NKH child we ever met. We were in hospice on end of life care and they drove up, from over an hour away to meet us. He opened our eyes to what was possible. That we might survive that stint in hospice (we did) and that life with NKH was absolutely possible.

Since then we’ve made a point to spend as much time as we could with them. We drove the two hours for their Halloween party last year. When he was in hospital I drove down again. Earlier this year when they were in a London hospital, I armed myself with delicious takeout  and we sat around his hospital bed catching up. Earlier this year we did a meet up with Eloise, Neil and Doms as well as Kirsty, Jon and Alexander. What a fun day that was.

Alexander’s beautiful, with the longest eyelashes you ever did see and the most piercing blue eyes. He’s got such presence. His parents have been an amazing source of comfort for us. They’ve been our cheerleaders, they’ve been a wealth of information. And they’ve also been fun. Jon is into Formula One like Sam, and when Jon stayed at ours instead of the hospital they flew drone simulators together.

They love their son with such overwhelming fierceness it gave me hope for what life was going to be like with our son. That it was possible to live on fierce love, that it was possible to survive all the adversity on love alone.

Earlier this week Alexander died.

Devastation doesn’t have enough meaning to explain the hole he’s leaving in so many lives. The giant hole he’s leaving in ours. Alexander was a fighter and he fought such a phenomenal fight. He dictated how things went right to the very end, and was a phenomenal, phenomenal person.

He is so loved. So so so loved. So many of us are broken and the world seems like a darker place without him. Alexander will be fiercely missed.

Fly high Alexander. We love you.

Jul 27
2

On Kaleb

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I’ve been silent this last little while because this is hard. I held myself back because I’m not sure exactly how to post about this. It feels raw and hard, and unbelievable. It feels too big, too wrong.

Kaleb, beautiful beautiful Kaleb, a 4 year old with NKH died.

 

 

 

 

I’ve spent forever looking at my cursor blink. Again, there are no words. This is too big for a Facebook blog post, where I post a picture and I’m sorry and I say something blithe about wings and NKH and encourage you to donate to research. Kaleb deserves more than that. Justine, his Mum, deserves more than that.

But the truth is, I’m grieving because I felt an affinity with Justine and Kaleb. Justine sent me funny Māori videos and would send encouraging words about Mikaere and I watched Kaleb from afar, loving on him from the other side of the world because he shares the c.395 mutation with Mikaere. I’ve never met them, I’ve never held Kaleb or hugged Justine. They live in Australia. And yet my heart is broken. I feel fragile and time has stilled and I can’t grasp the enormity of how Kaleb is not here, and how that feeds into the complexity of one day Mikaere will also not be here and I just… I don’t know how to face that.

And even worse, is that I know Justine and her family are facing that. Right now; and if it’s huge and unwieldy for me, their grief must be overwhelming. I think of Charlotte, who lives near them and how her grief must be heart-stoppingly raw too.

I think about that statue, with the grief and the insides all missing. I think about how my chest is getting pieces knocked out, how I’m feeling these deaths. There have been so many, and there will be so many more. I think about how grateful I am that I can hug Kai, that he’s here and how fearful I am for the day he’s not.

I think it’s mighty hard how grief and death are not talked about more frequently. That I live in the UK with their stiff upper lip-ness and “feelings, we don’t have feelings” kind of mentality and how do I navigate that when my life is perpetual grief and death? Would this life of death after death be easier to manage if we as a society had a healthier approach to acknowledging the hard feelings around grief? If we could talk about it with someone saying they’re sorry, or ‘let me know if I can help’ or ‘I can’t even imagine’ or ‘You’re so strong, I could never do what you do’ (shut up with your platitudes, they’re terrible). I’d like to be able to talk about grief and feel the things and be uncomfortable for a second because I’m sad because I hurt for this sweet little boy. I’d like to feel this grief without someone trying to fix it, or make it better.

I think that’s another conversation for another day because right now I don’t have the right words for this, I can’t explain the depth or the unwielding nature of grief I have for Kaleb. Of the fear I have for the day it’s Mikaere. I don’t have words. There are no words.

Grief. Anger and Rage and Disbelief. Disassociation. Tears. I just, no. Those little words aren’t enough. There is no relief or respite here.

Kaleb, you sweet sweet little boy. Fly high. You are so loved and will be fiercely missed.


————-

If you’d like to help, you can contribute to Kaleb’s funeral costs, here: gofundme.com/kalebsfuneralcosts

————-

NKH children I want to remember:

July 2018 – Kaleb Donaldson (4 years old)
July 2018 – Neeraj Ks (6 and a half months old)
March 2018 – Halle-Mae Arbuckle (17 months old)
Feb 2018 – Mayanak (4 years old)

(I had to stop myself at 2018. This list is already too heartbreaking).

Jul 06
0

On The Joseph’s Goal Ball

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Joseph’s Goal – it’s the NKH charity that we’ve got behind. If you follow us at all, you know this. We talk about them all the time.

Part of the reason is because we’ve spent so much time with Emma, Paul and Joe. We spent an entire morning with them last year, when we were just getting into the world of NKH, and they were so kind. I helped with the conference website last year, getting another speaker on the line up. We spent time together in Boston, the only two UK families who came over, we definitely stuck together. We had meals and I took every opportunity to love on baby Tom. Sam and I got into belly laughs when he was telling me about a guy that fell asleep with a burger in his hand (I love that that’s where his humour is at right now, it’s the best!)

We trust Emma and Paul and their trustees to make the best possible decisions with the funds we raise. We know their values are line with ours, which is why we’re two feet all in with Joseph’s Goal. Joe’s goal is our goal.

So when we found out they were doing the annual JG ball, we drove up to Wigan (near Manchester) to go. Woah. Buddy. Not only was traffic the craziest, but with Mikaere in his not quite perfect car seat and the vomiting (oh my days the vomiting) – it was a mission.

As an example: we arrived at the hotel the same time the ball started (we’d planned to arrive three – four hours beforehand…fail). We checked in, in a room that was three floors up and down a warren of hallways that wasn’t super accessible. We luckily had a very helpful bellboy help us up with our gear. We got Mikaere out of his buggy, and no joke, he was down two seconds on the beautifully white bedspread before he projectile vomited. There was vomit everywhere.

We rang down to reception, and they offered us an easier to access room. So Sam bathed Mikaere, our wonderful bellboy came back to help me move our gear and when we were finally ensconced in the new room, we were only and hour and a half late.

We dressed at lightening speed, fed Mikaere a reduced feed, put him in a shirt and ear defenders, and showed up two hours late to the ball.

I have never been more triumphant about getting somewhere in my life.

There is nothing like being in a giant room surrounded by people who have so much love for NKH kids, and who are throwing THOUSANDS of pounds at research. It was a giant room of love.

It was great to see Emma and Joe again, and also Nick Greene and his family were there too (the Greene family are an absolute delight by the way). I was surprised that bar Joe, Mikaere was the only other NKH kid there (knowing how supportive the community is).  Emma said that predominantly, for the ball it’s the local community that as rallied behind them (which is super amazing). And they weren’t wrong – there were a lot of famous footballers there, there were a lot of local businesses who had donated prizes and were bidding on all sorts.

I quite enjoyed bidding – I learnt quick to bid early because I was always, without fail going to be bidded over. My budget didn’t stretch nearly as far as some others. Sam did better than me, and got into a bidding war in the silent auction for a signed boxing glove.

It was a phenomenal night. Once there we had a great time. We were glad to finally get to sleep and breakfast at the hotel was a real treat. Side note: it really bothered me the breakfast room wasn’t accessible. We had to carry Kai’s buggy down the stairs. What would we have done if he was too heavy to lift?! Boo to inaccessible rooms as standard.

All in all it was a great night. I’m glad we went. It makes such a difference to know we’re not alone in this life, and there are others pushing towards funding for a cure too.

          

 

Jun 06
1

On meeting Arthur

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There are a few NKH family support groups. A worldwide one, a UK one and one where you can ask questions and the community will answer. Depending on how Mikaere is and how much time I have dictates how active I am in them. But I’m active enough to know the regulars. These NKH community groups have been a lifeline to share my fears and delights and to help answer questions in terms of research or care or medication or how to deal with feeds or our medical team. They are an unparalleled line of support.  I think it’s one of the benefits of having a diagnosis, is that you can find others who live the same life you do. Who have the same fears and have had to make the same choices.

There is one family we’ve met who are just a delight. We’ve been talking for months and months and a few weeks ago we happened to be in their neck of the woods. So we went by for a visit. It makes such a difference meeting people who get it, who live the same life you do.

Arthur is the sweetest little guy you could ever meet. It’s hard to tell from the photos/videos on Facebook, but he’s well more aware, active and more beautiful in person than I realised. I found it really difficult not to stare, he was just so amazing. And I know, NKH kids all present differently thanks to the hundreds of different mutations that cause it, but I couldn’t get over how amazing he was.

His Mum, Charlene was also a delight. We’ve been talking for just over a year – and honestly, meeting felt like were just continuing an ongoing conversation. It was so nice, so nice to talk to people who got it, to talk research and nurses and support. It was also so nice to do meds and feeds with someone who was also doing meds and feeds at the same time. And oh Ellie, totally fell in love when we met her. She was shy to start, but Sam won her over first and before we knew it we were bff’s (she loves Totoro more than I do, which is saying something).

I was sad to say goodbye. I was sad that we live so far from each other, but you guys! It’s just like finding family. I’m glad we’ve got people in our corner who understand. I’m hopeful we’ll see each other again soon! Fingers crossed.

PS, if you’d like to follow Arthur on facebook, you can do so over at Arthurs Adventures with NKH