Ellly

Jun 04

1

On Visiting Tenbury Wells

By Ellly | #teammikaere | No Comments

Last year when Mikaere was well, we took him to Tenbury Wells to introduce him to his Great Grandad. Since a whole year has gone by (!) and we were enjoying another relatively calm period, we went up again this year. It was amazing – I adore his Great Grandad (he’s great – he even tried to teach me to read music this year) and it was nice to feel like we could take Mikaere on a road trip. That we could leave home for a bit of a break and not be on edge the whole time, waiting for the untoward.

I just want to take a minute and say how huge travelling is for us. Before Mikaere both Sam and I were super into seeing the world. We had huge aspirations for travelling with our little guy and that was all put on hold when we found out about NKH. Taking him home to NZ is completely out of the question. Something like taking a road trip four hours north of London felt like a huge giant mission. We went last year I prepped like anything. We had all the emergency kit, I knew which hospital was closest to where we were staying, I knew who to talk to in the paediatric emergency department and I knew who to call if there was non-emergency blip. I did the research. We had the emergency gear and I was constantly waiting for the emergency to happen. Long story short, it didn’t.

This year, because Mikaere’s been so well I didn’t prep nearly as much. Sure, we had all the kit and our car was packed to the brim like a tetris puzzle (SO MUCH GEAR) but it was a much more relaxed trip. Mikaere’s bigger and I guess we’ve got a whole year of experience under our belts.

Even better was that the trip was delightfully uneventful. There were walks and piano playing and lingering meals and a lot of fantastic family time. Our little guy is so loved, it’s really reassuring to see so many people love him so openly. I also feel like four generations is a pretty special thing, so I’m glad we went. It was also really nice to have the extra arms, which meant that both Sam and I got a chance to sit down together (!) and drink hot beverages when they’re still hot (!) and generally relax a little bit.

I often wonder how much of the complexity and stress of travelling is just down to my fears about the worst case scenario, and I wonder how much of that I’ve been primed for by our medical team and labels like ‘terminal’ and ‘acute deterioration.’ True, I’d rather have all the kit and plans and not need them rather than the opposite, but I think my mindset around travelling and being away from the safety of home has been sculpted by the fears of our medical team.

The truth is going to Tenbury Wells was positively delightful. I’m glad we went. I’m hoping that the more practiced we are at leaving home, that one day we’ll eventually be able to holiday somewhere that is outside the safety of family.

May 25

1

On Getting a Second Crib for Mikaere

By Ellly | #teammikaere | No Comments

We have nurses who stay up with Mikaere twice a week. Mikaere sleeps in the lounge instead of with us, and the nurses care for him throughout the night. This worked well when Mikaere was small enough to sleep on the couch, with a foam tube under a sheet to keep him away from the couch edge. Except then Mikaere’s legs grew to the point where you couldn’t sit on the couch and not get kicked. It wasn’t until I walked in one morning to see one our elderly nurses sitting on the floor next to Mikaere that I realised this wasn’t a tenable solution.

But… I’m a bit fussy. We have a crib for Mikaere in our bedroom. A Silver Cross Ashby crib in white. It’s beautiful, well made and made in the UK. I love it. Buuut I assembled it in the bedroom and it was too big to move back and forth from the bedroom to the lounge 3-4 times a week.

So I went to go purchase a new one, except the Ashby has been discontinued. Great one, Silver Cross. The idea of having two different cribs irked the designer in me who enjoys symmetry and things that match. Very very blah.

So instead I scoured the internet, and found a lady who was an hour drive away selling hers. It wasn’t in perfect condition (seriously though, with a teething toddler what will be?) but it was close enough to be manageable. So off I went to collect it.

It was pretty solid (Silver Cross is always well made) and I was pretty happy with it. After a quick trip to B&Q, I got some non-toxic filler putty for the teeth marks and had a tin of (also non-toxic) paint colour matched and over the course of a weekend filled, sanded and painted the second crib.

And now I have two matching cribs for Mikaere. I’m pretty pleased with myself, to be honest. The things you do, hey?

It’s worked well for us, the second crib. He naps in it during the day, it’s a convenient safe place to put him down if we need to and still have him in my eyeline. And our nurses are no longer sitting on the floor.

May 23

2

On Reviewing the End of Life Care Plans

By Ellly | #teammikaere | No Comments

There’s an appointment I always dread and it happened last week. We met with our palliative care consultant at Hospice. She’s really lovely, has a keen sense of humour and is generally very sympathetic. She’s also incredibly practical and straightforward which I enjoy.

It wasn’t our palliative care consultant that made me dread this appointment, though. It’s that every six to nine months (acute events or slow declines not withstanding) we review Mikaere’s end of life care plan. Which is to say we go through, step by step and say, if the worst case scenario happened – at what point do we say enough is enough.

Blah. Just BLAH. My son is beautiful and right this minute chirpy and smiley and very happy kicking the crap out of some shredded paper. I hate having emotionally to go to that dark place. To remember the time he turned blue, that time he was in a seizure coma and then really think about his quality of life and the quality of death we’d wish for him. I hate that bit too. Thinking about his death. I mostly block out that it’s a very real and likely possibility. It just seems so unlikely because he’s so beautiful and alive and aware and happy. But mostly because I don’t want it to happen. It seems unlikely because I don’t want it to happen.

But then I think about to Halle Mae who gained her wings only a few months ago. I think about all the NKH babies who have passed and I know for certain it’s a possibility. And if it’s a possibility, then having a plan when we’re not in the world of grief, having something to fall back on and not have to make those decisions when we’re emotionally struggling is a good idea.

But to have a plan we have to consider the worst case scenario and I hate the worst case scenario. Even worse, this time it was just me. Sam had to work, so there I was. Our palliative care consultant, a palliative care nurse, our carer and a lady shadowing palliative care in hospice (because the more the merrier, apparently). A whole panel of people.

And we went down the list.

Our first scenario is an acute deterioration, which is to say “in the event of a sudden collapse with respiratory and/or cardiac arrest, where breathing and/or heart stops, we agree to”:

(it starts from the least invasive treatments)

Airway positioning. Yes. Do this. Reposition his airway, for sure.
Suctioning. Also yes. If we can get him breathing again with suction, it would be silly not to.
Oxygen. Yes. Yes to O2 through a nasal cannula.

These ones are all easy ones. They don’t hurt, they’re temporary and won’t cause any long term damage. The next one is:

Mouth to Mouth/Bag and Mask Ventilation for _____ minutes until parents are present or ambulance has arrived.

We said yes. For 5-10 minutes. And we debated every single one of those minutes, and the whys and whats and all the scenarios. It was hard not to say you do mouth to mouth for as long as you need to. It was hard to find the point to let go and that 5-10 minutes is our point. I even called Sam, interrupting his work day to help talk it out.

Because the next one?

We said no to External Cardiac Compressions.

We said no to CPR. I hate that we said no, but thinking about whats best for Mikaere rather than whats best for my emotional state… it’s a no. With a child, cardiac arrest is typically caused by respiratory arrest (the opposite is true in adults). Which is to say, if Mikaere has stopped breathing for long enough, it’s likely to also stop his heart from breathing.

If his breathing had stilled for long enough that his heart stops beating despite our interventions that’s a big big problem, cardiac compressions are likely to break his ribs and he’s still unlikely to survive. Quality of death. That’s what I keep telling myself. Quality of death is just as important as quality of life.

The rest? They were easy to say no to.

No to Endotracheal intubation and technical ventilation.
No to advanced life support with drugs and intravenous access.

No thank you. We’ve been there before, with both those scenarios. And considering the quality of life following those scenarios… we genuinely feel it would be better for Mikaere to pass. Quality of death, quality of life.

This scenario was by far the worst one. The acute deterioration, where it happens swiftly and unexpectedly. The other scenario, a slow deterioration instead of an acute event we’d be able to see it coming. It would be increased seizures, reduced consciousness, and Mikaere would increasingly be struggling to maintain his airway.

In this scenario, we’d do everything we could, up until intravenous access (with still no to mechanical ventilation). But with a slow deterioration, we’ll have the time to consider what’s best. We’ll have time to think on whether each intervention is right. The main point here is that we’d be able to transfer to hospice on end of life care if need be. There isn’t a point where we’d say we want to go to hospice. If it was anything like last time, we’ll all know it’s time. We’ll have the support we need to decide what’s best for Mikaere.

To be fair, we can change our minds at anytime about anything on the plan. We’re not locked in, but I think if it happens it’s best to have a plan. I know how crazy it gets, how fast everything moves and how you can get into a knee-jerk reaction only mode. How you can be so overwhelmed with all your feelings that thinking logically isn’t possible. That we might be still processing our fear and our grief to clearly think about whats best for for Mikaere.

Still, I walked out of the room heavy. So so heavy. It was beautiful day and Mikaere was happy, but it was a really really tough day. I’m glad we have a plan to which we agree on, but I hate we even need a plan. I hate NKH, I hate that we’re planning for his death. It’s horrific.

So, a cure, hey? That’s what we need. I’m thinking on more fundraising opportunities – because that’s what gets me through, and that’s what gives me hope. Wine tasting later in the summer – what do you think? Anyone keen?

May 16

1

On getting fitted for a wheelchair

By Ellly | #teammikaere | No Comments

When you think of a wheelchair, typically you think of a seat with giant wheels, where you self propel yourself forward. We see them on tv, in movies, we see them in hospitals, we see them on the street. That’s what I thought of when we first got assessed for special seating. A lovely lady named Mary came to make sure Mikaere’s buggy was supporting his body enough. Turns out Kai is very very tall and is swiftly outgrowing his buggy. Kai’s not even two yet and when he’s all strapped in his head brushes the top of the buggy. That’s not the main problem. The main problem is he’s very long and there’s no lateral support for my low tone baby. You can tell when he’s not strapped in, because he slumps forward, and kind of rolls to one side and his behind is on the bar. Womp.

So. We took our very long baby and made a visit to the Wheelchair Adaptive Seating services at our local hospital.

I’m not ready. I’m not ready for a wheelchair. I feel like we only just got that magical moment in supermarkets where everyone peers in and delights at how beautiful Mikaere is and THEY DON’T KNOW Kai has this terminal and rubbish metabolic disorder. For a few moments in the supermarket, I get to feel like a ‘typical’ parent, rather than a special needs one. I enjoy the ignorance of strangers – it’s all so refreshing. No odd stares, no comments, no pity or platitudes. It’s beautiful. Strangers love on my baby and tell me he’s beautiful. It’s the only moment of what I imagine neurotypical normality to feel like.

We’ll lose that with a wheelchair. And I know, I know the wheelchair designers try. They take a pram base and put some supportive seating in, instead of the pram seat. They give it a giant cute canopy covered in dots to try disguise it, but then they stick some medical paraphernalia on the frame. Here’s a structure for the oxygen tank, the suction machine goes here, and if he needs a vent then that would bolt on here. What happened at the end was less pram and more medicalised everything.

Just blaaaaaaaah. I’m not ready for a wheelchair. I’m just NOT.

There’s also the small matter that our current buggy (the Bob Revolution Pro) is an epic epic buggy. It’s the buggies of all buggies. I spent weeks researching when I was pregnant and we were so lucky to get it. It’s designed for running and it has suspension and it’s got three wheels. It’s perfect for all sorts of walks. Walking along the river in the dirt tracks, or mud if it’s muddy. Country walks when we’re out visiting. Across fields. Running when I want to go for a run. The wheels come off if we’ve packed the boot too full. It’s just the best buggy. It’s the best of all the buggies. By comparison the pram base of the wheelchair is good for inside and pavements. It’s no Bob. Not even close.

While I know we’ll have to switch at some point, I know the second we do our freedom for where we can take Mikaere will be halved. Just. Blah. Blah to this. Blah to more medical crap and less freedom. But it’s not the jobs of the wheelchair engineer ladies to deal with my emotions around “upgrading” my baby from a typical buggy to a wheelchair, so I plastered a smile on my face and let them adjust the chair around Mikaere.

The chair pictured isn’t the right size for Mikaere, it was used for measurement purposes. We haven’t ordered his one yet. I’m putting it off. There is still half an inch of space between Kai’s head and the top of the buggy and while he still fits I’m going to cling to the pram we have. Hey ho. I’ll keep you posted on the new wheelchair as things develop.

May 14

1

On meeting Prof. Nick Greene

By Ellly | #teammikaere | No Comments

We’re really lucky to live in London. One of the best cities in the world, for sure. One of the benefits is that it’s in this city you’ll find UCL, one of the main centres of research for gene therapy (a large chunk of the research done in the gene therapy community comes out of UCL). Conveniently it’s the centre Prof. Nick Greene is based at while he’s working on an NKH treatment. This means he’s in the best possible place in terms of the knowledge available to his team – they benefit from the knowledge the other teams are working on. Very exciting.

Even better for us, UCL is attached to our specialist hospital. So when we went in for Mikaere’s metabolic check, we met Nick for a coffee.

You guys – there is so much going on in the world of NKH research. In terms of understanding the development of NKH in unborn children, understanding the wider implications of NKH and the knock on effects into the one carbon folate system, making cell models, looking at treatments (like the components that make up cinnamon!) into bigger cures, like gene replacement therapy in mice. There is lots happening, a lot of moving parts. Very very exciting.

It’s inspiring, meeting Nick (who is the nicest guy, for sure) literally made me want to throw more money at research. Because that’s it, right? The more money the more research.

I talk a lot about fundraising. I ask over and over for donations, constantly putting my hand out (and I’m so grateful for the love and grace shown to me, you guys are the kindest and most generous friends we could have) – but what it really comes down to is I have the deepest hope that in Mikaere’s lifetime NKH will be a thing of the past. That there will be an effective treatment and future babies and families won’t have it like our kids do now. That our babies won’t die.

Now, that’s a lot of pressure to put on people like Nick, but to talk to him and have him discuss where they are right now and where they are going? It gives me hope.

When we met it was a beautiful day in London. Even better, Mikaere was on good form. He was sitting and talking and very awake and aware and interested in the world around him. I know the researchers don’t always get to see the day to day life of kids with the condition they’re researching (at least not in NKH. In NKH they’re still in mouse model stage) so it was a nice moment for Nick to meet Mikaere again. To see how well he’s doing, the development he’s making.

It was such a nice afternoon. I love that I live in a city where I can meet the guy trying to cure my sons terminal condition for a coffee. What a world, hey?

May 09

2

On the Carers Benefit

By Ellly | #teammikaere | No Comments

Before Mikaere I was a UX Designer. I worked as a contractor and I earned a pretty penny (the going rate for a senior UX contractor in London is about £400 – £550 a day). I had a healthy income, a healthy savings account and a fab disposable income. I wanted for nothing.

But because Mikaere has NKH and requires so much care, and our time is precious, there is no way I could leave him with someone else. So I said goodbye to my job and the pay check that came with it and settled in to being a special needs Mum.

Here’s the thing though – the carer’s benefit is £62.70 a week. If was being facetious, I’d say it was a daily rate of £12.54, if you assume that it’s for a working week. It’s not, clearly. By comparison, a carer (not even a nurse, just a carer) is paid about £8.50 an hour. Across a ten hour shift, that’s a day rate of £85.

I feel like the government doesn’t appreciate the work, time and effort special needs carers take on. I don’t think they appreciate the cost that comes with special needs. We’ve had a significant drop in household income, but we’re still expected to pay for all the special needs extras. Supplements, syringes, helmets, extra therapy sessions, compression suits, hospital parking, supplements. The list of special needs requirements is long.

We’re only just beginning to look at more equipment that may or may not be covered on the NHS. Supportive car seating, wheelchairs. And I know the world of hoists, fancy wet room equipment, safe sleeping systems and wheelchair accessible vehicles are coming.

It’s frustrating to know all of this is in our future and not know how we’re going to pay for it all. On top of that, I wonder how special needs single parents manage. Because bluntly, without Sam I couldn’t afford to care for Mikaere.

I know this is a bit of a whinge post, but I miss working. I miss earning an income and being a financially independent earner. I know giving up my job to care for Mikaere was the best decision for our little family (without a doubt) and I’d choose it again in a heartbeat, but that doesn’t mean I don’t miss working, because I do. I miss earning a pretty wage, and the financial ease that bought. I miss being treated like a competent adult (rather than “just” a mum who couldn’t possibly know more about my child’s condition than a doctor who keeps confusing it with Nonketotic Hyperglycaemia, a disorder about blood sugars).

I miss using my brain. Working on things outside the mundane of meds and sterilising and waiting on hold and arguing with the people who book medical appointments. Discussing emergency end of life care plans (read: if Mikaere has an ‘acute event’ – at which point do we stop providing care and let him go? Because we did that today). I’m over carefully negotiating his care with his team. (Sidenote: how many neurotypical parents have to negotiate what’s best for their children with people outside their family on a regular basis??).

I miss working and I’m jealous of neurotypical parents who get to choose what works best for them, working or not working.

And then I think about what’s best for Mikaere, and it’s me. I’m best for Mikaere. So I brush off the working angst, and endeavour to work more on a side hustle or two, and settle in to special needs parenting.

But it irks. Right now it irks that the conservative government doesn’t see the value in supporting families like ours to a point where we could live comfortably, without fear, without having to pick and choose which therapies we can afford. We’re expected to drop a wage and pick up additional the costs of special needs parenting. I’m frustrated benefits are being cut, the NHS is underfunded and social support isn’t a strong suit of the Tories.

I’m frustrated that apparently carers like me are meant to survive on £12.54 a day. I don’t expect to get paid to parent my kid, but it when I have to give up my job, do more than a typical carer does and cover the increased costs of special needs – that irks. £12.54 a day. £62.70 a week. £3260.40 a year. Less the National living wage. It’s ridiculous.

May 02

1

On NKH Awareness Day 2018

By Ellly | #teammikaere | No Comments

Today, May 2nd is NKH Awareness Day. I’m guessing that as you all are reading this, and you’re following along on IG or FB, you know what NKH is. You know that Mikaere has it, and you know it’s nothing something I’d wish on anyone.

For those of you that are new to #TeamMikaere – hi! Welcome! NKH stands for Nonketotic Hyperglycinemia and it’s a genetic metabolic disorder that means Mikaere can’t process glycine. Glycine is neurotransmitter and toxic levels in the brain mean severe developmental delay, seizures, feeding difficulties and highly medicalised life. It’s also terminal. Womp. You can find out more about NKH at foundationnkh.org

Rubbish, hey? Wouldn’t wish it on anyone. But along with the grief and pain and suffering, there are moments of joy. Kai is well loved. Not just by us, but you guys have been overwhelmingly supportive. We’re genuinely grateful for all the love our little guy has received from the world over. You guys are the best.

We’re asking that today, on NKH Awareness Day you skip your morning starbucks and donate £3 towards research. If you’re in the UK you can text – “NKHC50 £3” to 70070. If you’re not in the UK, you can donate at www.bit.ly/nkhcure

If donating is not your thing, there are other things you can do:

Tell someone about NKH. Tell them about Kai, and what it’s like and how rare it is. Tell them we’re fundraising for a cure.
Practice saying Nonketotic Hyperglycinemia. It’s what NKH stands for. Or, if you’re really feeling fancy, give Glycine Encephalopathy a go.
Help us turn facebook yellow and update your facebook profile picture with a yellow banner here (desktop only – sorry!) and a facebook cover photo here (or visit fundnkhcure.com for both!)
Purchase an Eva the Adventurer book. Less than £5 and royalties go to NKH Research

Apr 27

1

Update on the button + vomit

By Ellly | #teammikaere | No Comments

Before Mikaere had his surgery, I spoke to anyone and everyone whose child has had a gastrostomy. They all said the same thing – it was game changing for their child. And while there was a lot of positives, I was unprepared for the epic amounts of vomit.

Before the gastro Mikaere never vomited. If he did, it was very very rarely and only ever when he was ill. Now? Now I have vomit in my hair most days. I have buckets of things soaking in my bathtub to get out the vomit stains. My carpet smells of vomit. My washing machine is on an endless cycle of things that are covered in vomit. My clothes. Mikaere’s clothes. Sheets, muslins, blankets, couch covers. Today Mikaere even managed to vomit over the recycling bag, getting (and I kid you not because I had to sort it) every single piece of recycling we had covered in vomit.

Vomit rules our lives right now. Please hold off on the advice giving – we’ve done everything. Reduced the feeds, slowed the feeds, spread them out over the day. It doesn’t matter whether it’s blended food or formula or dieralyte or even just plain water. Gaviscon can suck it. He’s already on omprezole. He’s always upright when we feed him, either reclined or in supported seating. It’s not directly after a feed, it’s about 2-3 hours after. I’m not going to consider a fundo (like I said – I’m not looking for all the advice here. I’m just telling you where we are right now. Yes, we’ve talked to the surgeon, our paediatrician, our gp and all our nurses know).

We think it’s because of the gastrostomy. With the way his stomach has been hitched to the abdominal wall, which means food goes in, and is forced (because of the way the stomach is slanted) straight into the top of his intestines. This has changed the way he feels when he has food in his belly and because of how his stomach is pulled (unnaturally up towards his abdomen) it’s put pressure on the lower esophageal sphincter, which is that the nice bit at the bottom of your esophagus that keeps your food in.

There is research that says a lesser curvature gastrostomy reduces the incidence of postoperative gastroesophical reflux (aka, vomiting because of the gastro – source) so for everyone due to get a gastro – you’ve been warned. Asked for a hitch with a low curvature and make your surgeon agree.

In the meantime, I’m at a loss. I don’t know if this is going to be a forever thing (I desperately hope it’s not) or whether as his body acclimatises to the new stomach position and the stress on his oesophagus he’ll be able to hold food down.

Blah is how I feel about this. Blah and heartbroken for Kai who hates vomiting. With a passion and cries his little heart out when it happens. It’s heartbreaking.

Stupid vomit. We’re over it.

Apr 25

1

On a fundraising update

By Ellly | #teammikaere | No Comments

We as a little family have a fundraising target, aiming to raise £100k for NKH Research.

Thanks to you guys we’re currently at a whopping £53k (and counting!) – and that’s the truth, the bit that it’s thanks to you guys. Most of our fundraising has happened through other people, people who have held bbqs or cake morning’s or run a marathon. Small, easy things that have added up.

So I wanted to update you really quick on what’s going on:

1. The Eva Books!

I will forever love you guys for helping me translate the Eva books and even more for buying them! I’m still working my way through the translations but there is a whopping 15 Eva books available on Amazon. Eva is available in 15 different languages. Well, I say that, but she’s actually bilingual (all the translations have the English *and* the translation, for bilingual families). Like this:

Additionally, I was able to send off the first royalty donation this month, a whopping £430 went to Joseph’s Goal. Considering each book makes just over a £1 in royalty fees, I’m pretty happy with that.

If you haven’t got your copy yet, you can buy it from booksforwednesdays.com

PS – THANK YOU to everyone who has sent in a picture of their kid with an Eva book – you guys are the best!

2. #IFHNKH Tee’s

Did you see my previous post about the amazing IFHNKH tee’s?? I won’t rehash it, but I’m pleased to say we’ve sold a BUNCH of them – if I had shelves stocked I’d say they’re flying off (buuut thanks to the wonders of dropshipping, I thankfully don’t need to store shirts. They’re printed and shipped on demand, right after your purchase goes through. Best thing ever, hey?)

I just wanted to say thanks to everyone who had bought one. Each of these tee’s has a small margin on them and you know that small margin is going straight to NKH Research. Oh yeah!

If you want one, they’re available right in the teammikaere.com/shop If you’ve bought one – send me a selfie! I want to see you in your #ifhnkh shirts! x

PS – I’m still trying to figure out a decent dropshipping for the US. Will keep you posted!

3. BV Love for the phenomenal Adam

Adam, (who, prepare yourself for a throwback: having just the company, joined Sam on the last day of his ridiculous 72 mile walk along the Thames Path AND was on the winning Charity Quiz team) is riding from London to Paris. On a bicycle. 243 miles (did any else just cringe?)

Honestly, we’re so grateful that he’s doing this, so grateful that he’s raising funds for Joseph’s Goal and #teamMikaere, we’re genuinely blown away by the support. What a stand up guy, hey?

If you’re on of the #OTOD BV family and you’d like to #bgenerous – Please donate to Adams ridiculously amazing event at justgiving.com/fundraising/lonparmikaere

4. Kiwi Cross Crew Love for the phenomenal Margot

Margot I met at a ridiculous French Party when I first moved to London. She’s one of the most genuine, most lovely people I know and last weekend she ran her SECOND marathon for #teamMikaere (having just run the Berlin Marathon for us last September) – this time in London. She’s set a goal to raise £1k for Josephs Goal and #teamMikaere – and SMASHED IT.

At the risk of repeating myself, we’re so grateful for the love and support shown by Margot. Fun fact, she was the first person to ever babysit Mikaere. We were so pleased that she was running for #teamMikaere, we printed a London Marathon shirt, just for her.

If you fancy highfiving her, you can donate to her campaign: justgiving.com/fundraising/margot-knight

5. Fancy helping us fundraising?

We can’t raise these funds without you. We’ve asked everyone for cash over and over and our social circles are saturated (sorry about that). But what we can ask is if you could help us – could you organise a bag pack at your local supermarket? Could you put us down as your local cause at your nearest Waitrose? Could you do a cake morning at work, 50p per slice? Or a raffle? Or a BBQ one weekend, or anything. Whatever floats your boat.

Because here’s the thing – for every £5 we raise that’s £5 towards a cure for Mikaere. There is so little funding… it costs well over £300k to run a research lab for a year, and it’s managed between grants and fundraising by people like us.

We have hope in a future only because we know the only thing between us and a cure is money. So set the bar low, if you could help us raise £20, £50, £100 – it adds up and it makes a difference. Please help us give Mikaere a future. We can’t do it without you guys.

Apr 23

1

On the Boston Conference

By Ellly | #teammikaere | No Comments

I don’t know where to begin. I left Sam and Mikaere early on a Wednesday morning and caught a taxi the airpot. I left in a rush, which made the leaving part a twinge easier (because leaving your sweet, medically fragile child is never going to be easy, even in the best of times).

Then, before I knew it, I was in a cute little church hall with facebook come to life. I can’t even begin to express how amazing it’s been to meet the people I’ve been talking to online for the past year. To meet Tarah and Eric, Drake’s Parents. Maddison and Dalton, Kanes Parents. To meet little baby Willow, Jade and Larry, Evelyn (Bella’s Mom) and Trine with Karine and Robin with the most beautifully sweet Saige. To finally finally meet Kristin, the mighty force behind the NKH Crusaders and her son Thomas. To be reunited with Emma and Paul and Joe, the famous face behind Joseph’s Goal.

I get these will just be a long list of names for you. But I’ve been reading these names daily for the last 17 months. I’ve been sending messages and liking posts and commenting on photos and asking advice. I’ve been sharing their grief and cheering their joys and until this week, I’ve only been privy to their lives through a screen. Really. In my head I was still associating people with their full names and avatars, like you see on Facebook.

There was a lot of love at this conference, a lot of kindness and a lot of people who GET it. Who live a similar life a million miles from where we do. To be in the same room? To cuddle sweet Kane and to hold Willow and to sit with Joe? You guys. It was like my heart exploded – these kids were just like Mikaere. They were JUST LIKE HIM – I was in a room with my tribe. I can’t even begin to explain what an experience that was.

To leave my little guy with Sam and fly across an ocean was tough, but what I didn’t understand was that I was going to be with what essentially is my NKH family. It sounds mushy af but it was wonderful. To be with people who understood seizures and blowing up noses and were happy to talk out anti-epileptics and b-vitamins and how there has to be more going on in the folate system than we know about. It was like being thirsty for company and arriving at an oasis. And I drank my fill, believe you me. So many beautiful people, so many beautiful NKH babies. It was AMAZING.

Dr Van Hove and Dr Halder were also there to share where they are at with their research. I was very interested to hear the directions Dr Van Hove was exploring. Dr Halder was less straight forward with her work – there was a lot of holes in her talk and she’s hasn’t made as much progress as either Dr Nick Greene or Dr Van Hove, but it sounds like she has a lot of support and financial backing which is positive.

Essentially, Van Hove is looking at Chaperone Therapy, which is to say he’s looking for an existing FDA approved drug that will be able to help stabilise the proteins our kids make, allowing them to part-process glycine. This may even allow them to take a step down on the severity scale, drastically improving quality of life for our children. He’s also looking at the Serine hydroxymethyltranferase system, which is a system that keeps serine and glycine in equilibrium.

It was a very exciting conference, I feel like there was a lot of moving parts that came together in a positive way, particularly in terms of the charities and the researchers, and how we as #teamMikaere fit in, and how we can support the bigger players.

Unfortunately, the main theme that shone through was funding, and the lack of it. It costs approximately £200k a year to run a small lab at bare bones. What’s more, between the three researchers funds from the usual family charities are now diluted. Its difficult, because I know NKH families are already stretched, and have already reached out to their social circles for donations.

Funding, it’s always going to be the bottleneck between us and a cure. It just kept coming up again and again, how much funding is required and how little there is – some of our researchers are seriously struggling to stay afloat, which really was difficult to hear.

When the conference drew to a close I was sad to say goodbye. We’d only been together for three days but a lot happened. There was a lot going on and I’m grateful we got the time we did. What a whirlwind trip.

I know there will a UK Conference later this year and I am beside myself excited to be at that one too. It’s important, hey? This time with people who get it. I’m glad I went. Being away from Mikaere and Sam was rubbish, but I’m still glad I went.