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Ellly

Jul 28
2

On cancelling

By | #teammikaere | No Comments

Ahhh. Before Mikaere I couldn’t understand people who flaked. People who would agree to a time and date and event and just not show or would make excuses or whatever – I really struggled to empathise. As a person, I might be late but I prioritise getting there. If I say I’m going to be there, I am.

Today Mikaere and I were set to see a friend and her sweet 6 month old baby. It had taken us month to pin down a date and it was going to be in a lovely pub with a beer garden and the weather forecast was set to perfect. Except that just before 7am we were woken by our night nurse. Mikaere had a temperature. His chest was junky. He had a cold.

Womp. Wooooooooooooommmmppp. The offshoot of this is the more seizures he has as his body attempts to fight it off. Which has the delightful second effect of more vomits as he can’t handle the secretions when seizing. So much vomit.

I hate this. Was it because we were at the hospital yesterday? Because we had friends with kids over for dinner? Was it the small boy who made a beeline for Mikaere’s buggy and touched him before anyone could stop him? Was it someone at Sam’s work? Was it a stranger while we were on one of our walks?  Was it because I’ve been a bit more lax with the sterilising? That I just washed his spoons in soapy water and didn’t run them through the steriliser? I did say recently that it would be nice to build up Mikaere’s immune system a bit more, do less sterilising, have him hang out with more kids…

I’d forgotten how hard colds are Mikaere. So I take that all back, fuck building an immune system if it’s going to be so difficult for Mikaere to fight through.

I hate this. I hate that he’s sick. Hate that we’re constantly cancelling (I’m so, so sorry to everyone we’ve cancelled on, and I’m so grateful for your understanding and grace). I hate that my boy struggles so. Mostly I hate NKH. Positively loathe it. (So much so that I put it on a t-shirt and I wear it frequently).

Hopefully this cold will roll on by in the next day or two, but we’re battening down the hatches till it’s on it’s way. Send us immune-boasting-get-better thoughts.

Jul 27
2

On Kaleb

By | #teammikaere | No Comments

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 13
1

On The NKH Car Sticker

By | #teammikaere | One Comment

Did you know the ‘Baby on Board’ sign isn’t so that other drivers will drive safer around your car? It’s so that if you’re in a car accident, the emergency team know there is a baby in the car and to adjust their priorities appropriately.

I’ve been thinking about that for a while, not sure how to help in that situation. We carry emergency medication and emergency files with us everywhere we go. But if we were in a car accident and I was unable to advocate for Mikaere… what would we do then? Mikaere is on six hourly medications – or what if he was in so much pain he started seizing? There are a bunch of medications he’s not able to have – most which are first line seizure medications.

What would happen if I weren’t able to advocate for him?  It scares me.

So I’ve been looking at medical alert seatbelt things.

Then another NHK Mum posted a car window sticker (thanks Amber!). It was pretty brilliant, so I altered it slightly and got more printed. Now on our car window there are stickers to let emergency teams know specifically about Mikaere. We haven’t got the seatbelt alert yet, but at least there’s a sign in the window to indicate something’s wrong. I’m positive that if worst came to worst, he’d be taken care of the best he could.

PS – NKH family I have extras. If you want some, £1 each + p&p. I’ll send them to you! All proceeds go to Joseph’s Goal + NKH Research.

Jul 11
1

On Bar-b-kai 2: The Meat Returns

By | #teammikaere | No Comments

After the wonderfulness of the Joseph’s Goal Ball, we packed up the next morning and high tailed it back to Bedforshire. Penny and Tony were throwing the second Bar-b-Kai, a BBQ fundraiser. They threw one last year, in aid of Team Mikaere, Joseph’s Goal and NKH Research. It was our very first fundraiser and it set the tone for our attitudes towards fundraising.

I’ll forever be grateful for Penny and Tony for showing us how easy it could be, how insanely possible fundraising was. We’re so lucky, genuinely, to be surrounded by people who love Mikaere, who are willing to throw fundraisers for research. Last year, that first BBQ showed us that we could fundraise. That we could raise money for research, that we could, without a doubt, make a difference. It was possible, it was easy and we could do it.

So when they were throwing a second BBQ? We were going to be there. So we drove straight from Wigan down, about a six hour journey with comfort breaks for Mikaere and arrived just in time. YOU GUYS! There was a ridiculous amount of meat (cooked to perfection, and some kind of delicious butternut chickpea curry concotion with I inhaled thirds of), there was a super fun raffle and the wine/water game was addictive success. A special shout out to The Chocolate Deli in Worcester, who donated a beautiful chocolate hive which went up for raffle. It was very oh la!

We ate, we drank, we caught up and everyone loved on Kaikai. It was a lovely, lovely night. I’m so glad we were able to be there. In total they raised a ridiculous £1,200, which honestly – it makes me teary to think about how generous everyone was. Thank you, again, to Penny and Tony – you both have been so gracious to our little family.

Loved it. Charity BBQ’s are the best.

Jul 09
1

On finally putting on weight!

By | #teammikaere | No Comments

Woohooo!!!!! Thank fuck – Mikaere is gaining weight again. It was scary to watch his weight fall off, the beautiful chub of his cheeks disappear, his little arms and legs get more defined. That with every vomit I knew he was losing calories, and I watched at our weekly weigh in as the numbers went down and down and down. He got to under the 20% percentile – which isn’t a huge deal. He looked healthy (everyone kept saying he he was growing up, but it was because he lost all his baby weight!) and was still alert and aware, still active. There was a reason he was vomiting (#borderlineGastroRegret) and so we were reassured by our team that it was okay.

But as a mama, it was NOT okay. There was always the fear from our dietician that if he couldn’t get his weight up a ‘nutritionally complete’ formula was in Mikaere’s future, and as someone who hates the idea of processed anything (particularly when some of the ingredients are high in glycine aaand its stored in plastic bottles – so terrible!) I went on the offensive.

The first trick was getting the vomits down – we reduced his feeds from 4 meals with three snacks to four meals period, increasing the calories and the feed time, reducing the volume. We got to three hours on/three hours off. We hadn’t been on this schedule since we were on end of life care in hospice.

We moved away from regular formula to the blended diet where I painstakingly worked out the calories of each blend, going for high calorie low volume (he eats a lot of avocado, peanut butter, coconut oil and coconut yoghurt). It’s hard work and I have spreadsheets coming out my ears but you know what? It WORKED!

Because my baby is putting on weight. There is something beautiful about all that hard work and extra effort paying off in tangible numbers. Something beautiful that is mostly epic amounts of relief.

It’s even more likely that his was putting on weight had little to do with me and more because Mikaere very gradually stopped vomiting as frequently. For every feed he kept down he gave himself a better chance of putting on weight. That’s not to say the vomits have stopped, because they haven’t. We’re still at at least a vomit a day. Sometimes too. But against the 4-5 vomits we were having? I’ll take that improvement. In fact, even yesterday he had his first vomit free day in forever, so that’s positive!

I feel like I’m on high. When he reaches the 50th percentile, I’ll reduce the calories to a more appropriate level and start adding in more nutrition. We’re not there yet but that his weight is going up? I’m pleased. So so pleased.

 

Jul 06
0

On The Joseph’s Goal Ball

By | #teammikaere | No Comments

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.

          

 

Jul 04
1

On getting a new carseat

By | #teammikaere | No Comments

Mikaere has outgrown his baby carseat. His torso is too long and his shoulders are too wide. But because he’s so floppy there are few things we need: it needs to recline, it needs lateral support. We’d also ideally like a rear facing, swivel seat that fits in the front seat.

We went up to Milton Keynes and met the special needs lady at the In Centre Car Safety place. There were exactly two seats that might work for Mikaere, and only one was in stock. Womp. We wanted to wait for the second to come in before we committed. So we waited and waited, and Mikaere grew longer and longer and eventually his shoulders just plain wouldn’t fit.

A few weeks after, we happened to be at our friends place, who also has a special needs child. They offered us their old car seat which Max has grown out of. A Britax Dualfix Römer. It swivelled, it was rear facing and it reclined. We knew the (crash free) history. Amazing. We were grateful for their generosity (because we’d at this point be getting a charity grant for a new seat that may or may not work. Either that or we’d very gratefully fall on the generosity of our family).

So we fitted it and off we went. Now, it’s not perfect. Because of the angle of our car seats (boo racer seats) Mikaere is uncomfortably sat almost leaning forward when rear facing, even when the seat is reclined (when it’s not reclined he topples forward). So we swivel it around to forward facing, which works better (but I cringe on the inside, I know how much worse it is to be in an accident with a forward facing car seat. I’ve seen that gif and I hate it).

Also, there’s no lateral support. There’s room to grow, for sure, but in the meantime it means he kind of crinkles in on himself. It means we use Ellie Ears to support his sides and a trunki to support his head, and it doesn’t work well with the helmet so we pull that off every time he goes into the car. It’s a bit of a faff. You can see how rubbish Mikaere’s posture is when he’s in it:

Don’t get me wrong, it’s a hundred times better than being in a too small car seat, and a thousand times better than some of the other car seats we’ve tried. We’re grateful (beyond grateful) to even have the seat we do. It’s just not the ideal carseat. It’s about 80% awesome.

When we’re in the world of trying to provide enough postural support to fend off the future risk of scoliosis, I have the fear. 80% awesome is about 15% less than I’d like.

The last option we’re looking at is the 2018 Kilppan Kiss 2 – the car seat we’re STILL waiting to come in.  It’s been hailed as the all supportive, all singing and dancing chair that might be appropriate for Mikaere. But we don’t want to buy it outright (at £450 a pop) over the internet in case it isn’t inappropriate. So, we’re waiting for it to be in stock at the In Car Safety Centre for us to try (they’re the UK stockists).  Except we’ve been waiting almost 9 months now. So frustrating. Another 6-8 weeks, they told us. It could be 6-8 weeks. It’s more likely to be another 6 months.

Do you know what else? It blows my mind that there isn’t a car seat service, or place that caters specifically for car seats for special needs children who require extra support. It blows my mind. Frustrating af.  Even if there was just in insert that would bump up the supportiveness of our current car seat, that would be excellent. Blah that that service doesn’t exist.

In the mean time we try to make it work, we do the best we can. I try not to get down on the idea that this something that neurotypical parents don’t have to worry about it – but I can’t help put feel they have an easier job it in regards to car seats. Hey ho. I’m trying really hard not to be too bitter. I guess I should practice grace? We have carseat that swivels. Its safe for Mikaere, and we were so lucky to have such generous friends….

It is all those things, and I am grateful for all those things, but I still feel very blah about carseats that aren’t fully supportive. Womp. The special needs life is already difficult, so things like this which require lots of money, some puzzling and lots of time calling places and talking to people add’s difficulty to an already complex life. Blaaaah is how I feel about that added difficulty. Still, onwards we go.

Ps – our OT did some investigating and there is a charity that will do an hour long assessment to help you fit a car seat… for the heavily discounted cost of £150.  Wooomp. And that’s just for the assessment! That doesn’t include I’m sure any travel times, fitting costs or extra whats-its that we’re going to need. Did I mention that we’re a one salary family now because I had to give up my job to care for Mikaere?! How are are meant to afford all this extra stuff?

Jul 02
1

On all the amazing fundraising goodness

By | #teammikaere | No Comments

Hey you guys, we’ve been a bit absent lately. I’m not going to apologise for that, really. Life happened. The short of it is that I tried to do too much in one go and now I’m paying the price, but that’s okay because the outcome is that we hit the Van Hove Appeal goal! We raised $10,394 and absolutely SMASHED that $10k goal!

It was a pretty ambitious goal, to be honest. $10k is a huge, huge amount.  So thank you for everyone who donated in the name of #teamMikaere – we saw so many familiar names come through with donations, so many people we know and love – so thank you. You guys were a strong catalyst for pushing us forward. I’m not even kidding, 53 of the blue squares (each with a donation of $50 or more) were bought by #teamMikaere supporters. That’s a whopping 29% of all the squares, and while we were facilitating the campaign, this success honestly belongs to you and to the NKH community which rallied beautifully to the cause.

Now, I know that $10k doesn’t seem like much, but it makes all the difference. Unfortunately this amount won’t be matched by the University of Colorado like we had originally hoped. We tried working with them, but they’re a state funded school and can’t release the funds for Van Hove.

But we spent a lot of time working out a plan with Kristin from the NKH Crusaders and Emma from Josephs Goal, and we have a plan:

Van Hove needs $120k to keep his lab open from July 2018 – July 2019:

– NKH Crusaders has committed $25k upfront now, and a $15k grant early in 2019, with the second payment in partnership with the Nora Jane Almany Foundation.
– Joseph’s Goal has also committed $25k upfront, with a second payment of $15k in early 2019.
– The community has raised $10k with the Van Hove Appeal
– Les Petits Bourdons are sending $12k
– Hope for NKH is sending an additional $5k.
– Prof. Van Hove has gained the support of a fellow who will send $15k.

That’s $92k now with $30k to come. A whopping $122k all up. We’ve done it. We’ve raised enough money to keep Prof. Van Hove in NKH Research. That’s INCREDIBLY amazing. He’s the nicest of guys, literally one of the most knowledgable on NKH – and he is responsive to parents. That is HUGE. We’re grateful he’s still in research, we’re grateful he’s got funding for the next year.

In terms of more general fundraising, we’ve done really well, recently.

With Josie, Margot + Chris running their marathons (in Istanbul, London + Edinburgh respectively), Adam riding from London to Paris, with the corporate support from Infinis, the charity Art Exhibition… you guys, we’ve hit in £69,575.88 raised in the last year and a half. I’m blown away by the support and love people have shown towards Team Mikaere because you GUYS – that is a ridiculous number. Side note: the VH appeal is not even included in that number!)

Here is what I know about that number – that huge giant number was made predominantly of tiny tiny donations. Small little donations add up, and that number? We’re well on our way to our £100k goal. That’s a year worth of research right there.

With that in mind – we’re having another wine tasting! Are you in London and free on the afternoon of 22nd of July? We’re doing another wine tasting – this time with a twist! Less sitting down, and more interactive goodness, moving from table to table. Tasting wine, with pairings and wine facts and riddles and games. All proceeds go to Joseph’s Goal and NKH Research (obvs).  It’s in Putney (SW15 1SZ), tickets are £20 and available from here: https://bit.ly/wineforkai2

Please come drink wine with us. It’s going to be amazing.

Jun 11
1

On the Van Hove Appeal

By | #teammikaere | No Comments

I’m not sure how to write about this. Prof. Van Hove’s research lab is set to close at the end of June due to funding issues.

This man has spent more than 15 years in NKH research. It’s his research that laid the foundation for the other NKH teams. He discovered, defined and proved the difference between variant NKH + classic NKH, solving the mystery of why some kids present so so differently and don’t have mutation in the NKH genes. He proved that taking DXM + SB earlier in life has a positive effect on outcome in his sibling study. He’s set to prove that NKH causes growth issues in the brain (as opposed to formation issues) which is hugely exciting (and the opposite to what most metabolic consultants thing).

He’s the doctor our metabolic consultants ask for help. He’s the person the NKH Research teams want to pick the brain of. Notre Dame worked with him in the beginning of their research group, inviting him to speak to their students. Prof. Nick Greene from UCL has said openly, several times that there is no person with more NKH knowledge than Prof. Van Hove.

He has also, over the years, amassed a metabolic network that is second to none. When speaking to Nick, he said that every time he makes a new contact in the metabolic community about NKH, they already know and are fond of Prof. Van Hove.

He’s worked hard, a lifetimes worth of work, with his sole focus being NKH. Which is odd, considering neither the Notre Dame team or the UCL team are focused on NKH (Notre Dame’s main focus is Malaria. UCL is at least closer with Neural Tube Defects, which share mutations in the GLDC gene).

I can’t believe he’s closing, and when I heard, my initial reaction was ‘what can I do?’

It turns out, quite a lot. Not alone, of course. Both NKH Crusaders and Joseph’s Goal were already moving to help – they’ve both set aside a small grant for Van Hove. It’s not enough to cover his costs till the next grant comes in (due Feb 2019). But, if they can get it matched from University of Colorado, that would put Van Hove short only $20k. If we were also able to get matching, then we’d need to supply $10k.

$10,000. That feels like a lot of zeros.

But here’s the thing – if we can’t raise the full amount to keep Van Hove going till the next grant comes in, there is no point. We’ll end up in the same situation again a few months down the road. If Van Hove closes before the grant comes in, then any money we send is essentially wasted.

That’s the fear of NKH Crusaders and Joseph’s Goal. If we don’t get enough to cover the entire year, if the University of Colorado is not able to match what we raise, then those extra funds will go to researchers not on the brink of closing.

So – it’s all or nothing. If we, as a community, can raise $10k, we can save Van Hove’s lab from closing. That’s it. $10,000 (well, actually only $9550 now, because we donated the entirety of our allocated donation savings to get things going). If I rationalise it into more manageable chunks, 191 families would need to donate $50 each to make that much. Now, there are almost 500 members of the NKH Q&A Community, so I’d need approximately 40% of them to donate.

Seems doable, right? So, we’re asking that each NKH family donate $50. Not to share on facebook, not to ask their friends or family (who have no doubt been asked time and time again for money) but us. This is our community. This is our researcher.

Now, not everyone has $50 to spare – I know. It’s a big ask to pull $50 out of your pocket. But you know what? As a fundraising goal, it’s really low.  Keep any eye out for a few more posts on how to fundraise later in the week.

Here is what I want to say – I want to keep the most knowledgable NKH man in NKH research. I don’t want Van Hove to close his lab. So, will you help? Will you donate $50?

US folk: https://www.facebook.com/donate/312802479252342/

UK/EU folk: https://mydonate.bt.com/fundraisers/vanhoveappeal

Help me turn the grid blue. For more information: http://fundnkhcure.com/

Jun 06
1

On meeting Arthur

By | #teammikaere | No Comments

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