On The Walk

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Wow. The Walk. If you follow us on social media, you’ll know the week before last I walked 78 miles along the Thames Path. 78 MILES! That’s 125km. That’s three marathons in three days. That’s a crazy, crazy long way. I didn’t  realise how long a way it was.

I walked it with Paul – a work colleague who organised the walk as part of a charity week our work does every year. Then every day, other colleagues and friends and partners would join us, help keep their spirits up. We all wore the same T-shirt, and we carried charity boxes, asking people on the way through if they’d care to donate. We’d planned to walk about 25 miles a day, from Henley to Windsor, Windsor to Richmond, and Richmond all the way to Thames Barrier, out East London.

Well.

I did not train. There were no long walks in the lead-up. Mostly we were busy with Kai and sorting the crazy that is our day-to-day. So when it came time – I bought a pair of fancy walking trousers and half a dozen pairs of merino socks from Amazon and called it good.

Day One was probably the easiest day – I was up at 5:45am, and caught a train out to Reading. My body had no idea what was coming, everyone was in good spirits, the weather was phenomenal. Because we hit our goal of £5k (!!) in donations, I did the first half of the day in a ridiculous gecko outfit. Everyone else thought it was hilarious, and were all delighted – except that it was hot, and I probably wasn’t drinking as much water as I should have. But the first 15 miles passed easily enough, we stopped for lunch, still happy, had a few beers.

When it came time, we shouldered on our packs for the rest of the walk.  That’s when it got a bit harder. I had packed more than anyone else, and my pack was heavy – well over 10kgs. I ran out of water pretty quickly and my body was feeling it. By the time the team pulled into the pub and had stopped moving, I was dizzy, shaking and I’m embarrassed to say I vomited… Turns out eating a lot of protein snacks without drinking any water is a bad idea. When I called home from the hotel, I was having a tough time. I missed Elly and Kai. I was sore. My body hurt.

I’d covered 23 miles in a day. I had a cold bath for my feet/legs and a regular bath for the rest of my body, but man, was I still feeling it.

 

Day Two, my legs and feet felt good (thank goodness!) The baths and early night did their job. Everyone started out bright and early, feeling great and ready to go. The arrival of fresh faces and legs also kept our spirits up. One of our sponsors had given us a secret mission: getting photos outside the FM Global offices.  It wasn’t on the trail, so before we set off Lewis and I dashed out to get it done before the party moved off.  We managed it, but we were accosted by a rude security agent. Apparently not a fan of geckos! Secret mission completed – off we went!

It was a long way to lunch though, and the group didn’t stop until 14:30. That’s a long time to be walking, and we were feeling every mile – we must have covered at least 17 miles that morning! We were all hungry and ready for a sit-down. The pub we stopped at (The Red Lion) had a great outside area where boats could moor up. We sat outside, in the sun by the river.  At this point, a number of people had very severe blisters and sore feet. We all pulled our socks off to administer some much-needed feet care. I was pretty smug, no blisters as yet!

It was also decided that I was probably more dehydrated than I thought – the gecko costume was HOT. I couldn’t keep walking in it without hurting myself, so I made the decision to switch out.  While we were fundraising, there had been some talk about a bee costume, as the bee, thanks to its odd aerodynamic shape had become a symbol for NKH.  Except I’m a grown manly, man. Gecko’s seemed more appropriate than a bee. As a joke, I’d picked up a bee costume when I got the gecko outfit – but it was meant for a small girl and came complete with an antenna headband, and sparkly gold wings.

Well, needs must, and it was lighter than the gecko costume, so on it went! I just managed to squeeze into it! (Elly sent me a message after I sent her a photo, telling me I was the prettiest bee there ever was!)

The afternoon wasn’t so bad – we’d gotten better at talking to people about why we were walking and asking for donations. Watching Lewis board a tourists boat shaking the collection tins made us laugh.

Toward the end of Day Two, we were still walking as the sun was going down. I’d fallen to the back of the group, trying to do video shout-outs for the people who had sponsored these miles – I wanted to get them done before the sun went down completely. Making our way into Richmond in darkness, lighting up the paths with our phones inbuilt torches – not ideal. It was straight out of the Blair Witch Project! We were exhausted, sore and walking in the dark those last few miles was so demoralising. It’s hard to keep going when it’s pitch black, the group was spread out along the trail and I was at the back, no idea where I was going. Spirits were low. My phone said I’d clocked over 30 miles today. Whaaaaat. It was such a struggle.

Eventually, I made it to the final pub for the day, plodding in looking like I was going to fall over. It was a shock to see Elly and Kai in the pub – they’d come out to surprise me! I was exhausted, emotional and quite dehydrated. Elly fussed (apparently I was shivering and pale, she missed the bit where I had to put my head between my knees to the floor to stave off the dizziness that came with being stationary). I felt better after eating, even more so after being plied with water and lemonade. I passed on the beer, I didn’t think I could manage it. That’s how sad and sore I was!

What a tough day.  Over 30 miles were clocked on my phone pedometer – I couldn’t believe it. What stupidly long way to walk! Later, at the hotel, I managed another cold bath for my legs, and feet. I genuinely hoped they would not be so sore in the morning and I’d be able to continue. I know I wasn’t the only one – everyone was feeling the pain from such a long day.

 

 

The morning of Day Three wasn’t quite so cherry (the cold bath hadn’t worked quite as well as it had before – I still had stiff legs and sore feet). No blisters though, the fancy merino socks were working! After a good breakfast, some ibuprofen and lots of first aid on the feet (vaseline, baby powder, zinc oxide tape and sports strapping) we were ready to go. It helped that today was the last day, and I knew this time tomorrow I’d be at home with Elly and Kai. Only 27 miles to go.

Again, fresh faces and legs helped get the walk underway with high spirits and the group eventually made our way into the city. As we got closer in, Elly & Kai joined us at Hammersmith Bridge. I was very very glad to see them! I’d missed them, especially Kai. It made a difference to the group, having Kai join us. People in the group took turns pushing Kai’s buggy, and people collecting donations would point Kai out when talking about NKH and why we were walking.

Lunch was a too short affair – it was a nice day for a Sunday Lunch by the River. The pub plied us with drinks, and food and even made a donation (thanks, The Waterfront).  We were all at the point familiar with the half day foot care routine. Everyone was changing socks, massaging feet, trying to ease the blister pain. I was sad to say goodbye to Elly and Kai and continue on.

But, my Uncle Rob joined us at Battersea Park. The second half of the day really began to take its toll.  Everyone was feeling the distance.  Even worse was that a mile 67, we were challenged by a sponsor to do 67 jumping jacks (Thanks, Sean!).  It was a struggle, these last few miles. We were all in pain, and tired and really, just motivation became a real struggle. Some of our team even had to stop – I don’t blame them, it was such a tough walk.

As we hit further into the city, we had a fresh supply of new faces and legs join us – new people with their enthusiasm to keep on really kept us going. It really helped those of us who had walked miles and miles, keeping us on the track, putting one foot in front of the other. Getting into central London had its perks – there were lots of things to see, plenty of famous London landmarks (which thankfully made their way into the video shoutouts).

But the further we walked, past Southbank, St Pauls, the Globe, the Shard… the landmarks got few and far between, and the sun was setting. Walking in the dark is always the hardest – even worse was that we were now being blinded by car lights as we walked near the roads. Walking around Greenwich, there was an awful lot of construction going on. It had a very very different feel from the leafy path we’d left that morning.

We’d been walking hours and hours in the dark, and had just circumvented the O2 arena when Elly and Kai appeared! Elly had driven out to the Thames Barrier, but with us not being there had walked up the path to meet us. Good thing too, because those last two miles were killer. I’d long run out of water (Elly dived into a pub to refill my water bottle, she’s the best). Elly said later you could tell who had walked several days, and who had joined that day. I know my gait had changed, my whole body felt stiff, and my ankles were sore and swollen. I didn’t even want to contemplate the state of my feet.

That last mile felt never-ending. I was super focused, not really able to say much or interact – just concentrating on moving one foot in front of the other, getting to the end. When we finally, finally reached the end – I was relieved. Everyone cheered, and there were tears too. I was pretty emotional. I couldn’t believe we’d done it, no training – just straight walked 78 miles.  Possibly the stupidest thing I’d ever asked my body to do, but there you go.

 

It was worth it, for the money we raised for NKH Research, for Kai. We raised just under £9000 pounds. I couldn’t believe it, really. It made every step worth it.

If you’re interested in donating, the justgiving campaign is still open. Go on – tip us over the £9000 mark.

https://www.justgiving.com/fundraising/bazaarvoice-thames-walk

I want to say thank you to everyone. Thank you to Paul, for organising the walk and walking the whole way with me. Thank you to all the walkers who joined us, to Naomi, Marion, Lewis, Soph and Caroline for doing the hard yards. I know I’m not naming everyone (there are so many people I want to thank!) but to all the BVers, friends and family who walked with us – we really couldn’t have done it without you keeping our spirits up.

Thank you to everyone who donated, to everyone who sponsored a mile, everyone from BV Austin who donated, to the shout out at the Gong, thank you. To all the strangers on the trail who donated into the Collection Tins, or took a card to follow Kai’s story – you’re amazing. Thank you. To all the pubs who gave us a place to rest and put our feet up, to Elly for telling me to buy merino wool socks (and thus saving my feet from all the potential blisters!).

Thank you to everyone who followed the walk. I’m so humbled. Thank you.

I’m proud that I managed to finish the entire 78 miles but even more proud of the money we raised and the difference it will make to NKH research.

So yes, 78 miles. Done!

Donate and support Sam’s 78 miles Thames Path Walk (in costume!)

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If you’ve been following us on Social Media, you know that today – TODAY (!!!!!) Sam is starting the Thames Path Walk. He’s walking 78 miles across three days (a marathon a day) to raise awareness and funds for NKH Research.

We’re really lucky with this one – this isn’t one of our events, it was put on by Bazaarvoice – Sam’s Work. BV (already having a soft spot with us as Kai is one of three London BV babies) has been an incredible support for our little family this past year, I can’t even begin to share how many times Sam has had to work from hospice or hospital and it’s been no problem. How many BVers have come to our fundraising events (High five to wine and pasta, right?!) and how many send messages of support and love and how many have donated each time we’ve asked.

It’s been phenomenal.

On top of all of this, they put on the Thames Walk. When Sam told me about it I laughed – I loved the idea of him walking a crazy way to raise funds (usually it is me suggesting the crazy adventure, so it was nice that this time he was doing it). Not only did they make giant posters of Kai to convince others to join them on the walk (and many people ARE joining them) (also, I  wasn’t kidding about the massive posters – they’re A0. They’re GIANT.)

There are also walking/running events happening in other BV offices. BV Germany are walking the River Isar, in Munich and BV Amsterdam ran around Vondel Park earlier in the week:

Overwhelmed by everyone’s generosity doesn’t even cover it. To the people walking, running, contributing – thank you.  To everyone who is walking – we love you. To Chris for organising the Amsterdam run, to Inas for organising the Munich walk – thank you, genuinely.  To Paul, who organised the UK walk – we adore you. We’re so grateful.

To everyone who donated and/or sponsored a mile – WOAH BUDDY. We didn’t expect to get every mile sponsored, so THANK YOU. Thank you to everyone who sponsored more than one mile (sorry we could only give you one!), we’re so grateful. So so so grateful. Genuinely, from the very bottom of our little hearts.

You guys are the best. Absolutely THE BEST! Expect a 15sec instagram story video shout out. Follow us on instagram (@teammikaere) to see the videos with your shout outs come up over of the weekend.

Here’s the other thing – as the BV team have fundraised over £5k, Sam has to do the walk – the full 78 miles – in costume. We (read: I) have been delightfully picking out ridiculous costumes. Gandalf? A giant lobster bug? A giant inflatable whoopie cushion? You’ll need to watch Sam’s first video to see what was picked.

We’re still collecting donations – the team hasn’t quite met their £7.8k (!!!!!) goal yet, so if you’re able – please donate. Anything – a pound, five, ten, twenty. It all helps. It all goes to research – in our case, to the team under Prof. Nick Greene at UCL, looking at Gene Therapy for NKH – which for us would be game changing. It would mean

It would mean a future with Kai. And a quality future – less medication, less deterioration, less pain.

So please, if you can – dig deep.

On an even soppier note, we’re really excited for Sam. He’s done no training, and three days out doesn’t have enough socks or own a pair of trousers that aren’t jeans, but we have complete faith that he’ll cross that finish line, blisters or no.

The things you do for your family, hey? We’re proud of you, baby. See you on the other side!

The wine tasting

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We’re pretty lucky to have so many close friends willing to pitch in to raise money for NKH Research. We’ve raised an awful lot of money, but it’s been tough to know that it’s barely a drop in the bucket. To continuously ask and lean on the generousity of our friends and family (you guys!) has been a continuous effort in perseverance. Which is why we’re so so grateful when our friends help.

One of our friends, Chris, works at Majestic Wines in Putney. He very very kindly offered to help us put on a wine tasting. We picked a date, a friend of ours (thanks Sohail!) donated the venue, the delightful Putney Rowing Club. And off we went.

It was a fab afternoon. We had a small number of people come, but I’m so grateful for the people that did. We even had our bereavement nurse from NICU come by – she hadn’t seen Kai since we were discharged and it was such an emotional moment to see her, and to have her love on Kai. 

It was a fab mix of people on the day. Chris did a hilarious and amazing job of running through a tasting (the first half of the tasting was paired. Knowing how a sav is better with goats cheese, or that cheddar makes Merlot taste better was pretty impressive). The second half was a blind tasting which was hilarious.
Generally, we had a lovely afternoon in good company with wine. We also raised over £500 on the night, with another £450 coming in from people who couldn’t make the event. Colour us impressed. We were very very pleased.

This was actually the first event we’ve organised ourselves. Isn’t that crazy? We’ve partly organised many, and we’ve said ‘yes please’ half a dozen times when someone has offered to run a fundraiser (we’re so grateful, hey. So so so grateful). But this? This was all us. Well. This was mostly Sam. I mostly enjoyed the wine!

We still feel like we’re pretty green at this fundraising thing, so we took away plenty of ideas (like that raffles are more about winning than the prize. Next time we’ll do lots of small hampers, rather than one large one!). 

Thank you to everyone who came, and for all those that donated when they couldn’t. We’ll have another one soon, in the winter when wine and warmth go hand in hand. It’s going to be great 🙂 

On the Birthday Bash

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Oh my days. OH MY DAYS. We’ve just spent the weekend up with Sam’s folks. Their friends from church were having a few milestone birthdays and were throwing a birthday bash. 

It was fabulous. There were many cakes, and deliciousness. It was warm, everyone sat outside in the early evening air. I met so many lovely people, so many lovely generous people. 

There was a raffle and an art sale and giant jenga. A whole night of talking to people and sharing our story and hearing about others lives. About their grandchildren and the work they’ve done and the projects people are working on.

It was full on, and generally pretty wonderful. 

After the festivities, when I was falling asleep in the lounge, the final donation count came through. 

On the night we raised £858. I was overwhelmed. I really really was. I got all teared up – people were so generous. As if that number wasn’t huge enough, the next morning more donations had arrived. By the time the weekend was up, that number had moved up to £1058. 

We raised over a grand from a birthday party.  So thank you to everyone who came. Thank you to Jude, Marion, Margot, John and Dorothy for sharing your birthday’s with us. Thank you to Judith, who I know would have been there with us if she could have been. Thank you to everyone who donated, who participated in the raffle (I myself came away with a happy little ceramic lizard, who now lives on my balcony).   Thank to everyone who was there – we are so incredibly grateful to have you all in our corner.

xx


PS – special thank you to Bryan for holding Kai while I ate. He was so comfortable with you he fell right off to sleep. Watching you with him was a nice moment for us. So thank you! 

On the Piccolo Picnic

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Piccolo is a super cute baby food brand that’s just launched. Buggyfit is a fitness class for Mums and their babies in the buggy. Recently, I was delighted to be introduced to both – Piccolo launched their baby food range at picnic with our local buggyfit chapter, where we were lucky to be put forward as the charity beneficiary.

Oh my days, it was lovely to be out in the sun with some of our NCT friends (Kai is way too unpredictable to commit to regular buggyfit classes, but our NCT friends go). It was nice to hear about Piccolo and weaning, and watch the ladies play buggyfit games.

I did the spiel and we had a silent auction with some fab fab fab prizes. And to be honest, Kai and I just enjoyed hanging out with our NCT friends. It was beautiful afternoon out, London is amazing in the summer and when you’re in good company? All the better.

Thanks to everyone who came out, thanks to everyone who participated in the silent auction, who bought cards and made donations. Thanks to Jo from Piccolo and Eliza from Buggyfit, and thanks to Clare and Jenny for putting us forward. We love you guys xx

On how to say NKH + wine

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We’re having another fundraiser!

I know. Another one. We are *relentless* in the pursuit of a cure. Cures need funding – especially for one as rare and as unknown as ours.

Let’s try a thing right now – you probably know that Kai has NKH. Do you know what NKH stands for? Can you pronounce it without stumbling over all the many syllables that it has?

It’s okay, we couldn’t at first either. Nonketotic Hyperglycinemia. In the beginning, my eyes would kind of glaze over the ‘glycinemia’ bit and I’d slur it into one really quickly as if by slurring no one would know I couldn’t say it properly. In the end I went away and had a bit of a practice. If I had to practice it I don’t expect anyone else to be able to say it right off the bat.

But… if you can’t say it – if it’s not even easy to pronounce, how can we spread awareness about it? How can we raise all the money for a cause that no one knows about?

So – Nonketotic Hyperglycinemia.

The first bits pretty easy: Non.

The next word, phonetically:  Key-tot-ic

Ketotic means the body is using energy from ketones in the blood. When the body breaks down fat, it breaks them down into ketones.

Nonketotic.

The last word Hyperglycinemia.

Phonetically:  Hyper (that’s pretty easy) Gly – sin – e – me – a

Hyper essentially means elevated. Glycine is an amino acid – it’s what Kai can’t process. All together Hyperglycinemia is where there are high levels of glycine in the blood.

NKH. Nonketotic Hyperglycinemia.

Do you know what’s easier than practicing how to say Nonketotic Hyperglycinemia??

Drinking wine.

Lots of delicious wine. By the Thames. In a fancy fancy sailing club like we’re all very well to do. We’re doing a wine tasting in a sailing club. It is going to be delicious.

When: Sat 12 August, 3:15pm
Where: Ranleigh Sailing Club, Putney, SW15 1LB
Cost: £5 to book your ticket, donate what you think it was worth on the day
Tickets: www.bit.ly/wineforkai

Please come, if you can. We’d love to meet you, and hang out and drink wine.

Thanks to Chris at Majestic Wines in Putney for donating his time for the wine tasting, and Sohail from the fab Clia Care for donating the time at the venue + palette cleansers. You guys are amazing and we love you.

On the Avenue Pasta Night Fundraiser

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We were very lucky that a local cookery school, The Avenue, were open to running a fundraiser for us. We booked a #teamMikaere charity dinner class, and set of to sell 24 tickets.

Well, the problem with London is that so many people had plans, and we really struggled. It wasn’t until we had a change of tack and Sam shared it at a work conference that it was taken up as a ‘team building’ event. We didn’t quite sell all our spots, but thanks to a few generous people (thanks Amanda and Eugene!) we managed a total of 21, so not bad. 

And after loads of organising and ticket hustling, it was amazing to finally be there on the night! We had a raffle, and I did my spiel, and a few people finally got to meet Kai that hadn’t yet. 

There was a generous flow of wine, and everyone was so delightful. I left with Kai before the action started but oh my days, the texts I got through the night and the stories after – apparently it was amazing. 

I was delighted, I was told the food was delicious, the host and chefs hilarious and generally everyone had an excellent time.

Off the back of that, we raised a total of £758. In a single night, good job team!! 

We really are doing everything we can to help fund a cure. I’m glad that so far our events have been well received. Nothing like doing your bit of charity with a wine in one hand and a bowl of delicious pasta in the other!

Thanks to everyone who bought a ticket and came. Thanks to everyone to textd in a donation, bought a card, or a bracelet, or a raffle ticket. You guys are fab, and just – we really are grateful. I say it all the time, but each donation has such a profound effect on the research that can be done. I’m probably being melodramatic, but I really do feel like each pound we raise will get us closer to a future with Kai.

So, thanks to everyone who made it. You guys are amazing! 

On the thing with fundraisers

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

If you’ve been to one of our fundraising events you would have heard either me or Sam do it.

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

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

And as I go through this little spiel I feel horrid. I feel guilty. I feel a little bit like I’m using Kai as a show pony for donations. People respond with such empathy when they see Kai. When they can see how delightfully cute he is, and how very real. We also get more donations when Kai is right there.

Its even trickier when parents are there, especially parents with young babies. Some mums tear up when I talk. They hug their children a bit tighter, and you can see the thoughts run across their face; the oh God, how terrible. I’m so sad for them. I’m so glad it’s not us. And while I talk, I watch this series of thoughts play out over and over across hundreds of faces. 

And I feel rubbish. I don’t want to talk about Kai’s delays. About his death or seizures or profound disability or the huge medical team or the kajillions of meds we’re on. I want to gush. I want to go on and on about how beautiful he is. How vocal and chatty he is right now, how he’s getting much better at swallowing and taking a bottle. How our physio said he’s getting better at holding his head up and how pleased our dietician was to see Kai eating purée, and how he’s grown an extra centimetre in the last month. 

I want to celebrate Kai, not cart him around telling people our woeful tale over and over.

But, what follows on from that line about hope is how important the research is. About how it’s funded by families like ours, who fundraise. There’s only a handful of us. Less than the number of fingers on on your hand who fundraise for this charity. For NKH research. Who go out and do the spiel. 

To have hope, we need research. For research we need the fundraising. Which means the talk to strangers, to ask them to donate. To buy some cards or a bracelet, or text in a donation (txt TKAI99 £5 to 70070), or to buy a raffle ticket (£2 for a chance to win a fancy hamper worth £180!). 

It’s a catch 22. I know that the need for research completely overwhelms my dislike of the talk. So we go out and we do it. And it’s hard every single time. 

But then the next day someone will donate a significant amount with a comment along the lines of “Heard you speak, thinking of you x”, or we’ll get to the end of an event and have raised hundreds of pounds and I’ll be overwhelmed with gratitude for the generosity people have shown us.

And suddenly it feels worth it. It feels like people care. It fuels the hope that one day we’ll be able to say we helped fund a cure for NKH. That one day (oh my days the hope!) we might even have a future with Kai.