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London

Jun 02
0

On the days following our A&E visit

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Mikaere’s been a bit flat since our a&e visit. Many hours sleeping, but he has some active/awake time. As It’s so warm, we’re out on the balcony for portions of the day, when he’s up for it, willing the breeze to blow our way. Warm weather is always bitter sweet for us, it’s delicious but the risk of seizures increases.
So we pulled out the cool blanket, the magic mat that’s filled with gel, so it’s cool to the touch. It lasts for about 15 minutes, and then you move to a new spot. It’s worked wonders to keep Mikaere cool.
We’re still not comfortable going out into the world, and the pictures of everyone else enjoying their break at the beach or in crowds of just, out an about with a bit of normality has me feeling very green. But onwards we go, enjoying the balcony, a bit of water in a tray, paddling pool static nonsense.
Onwards we go. Managed to get some smiles, even 🙂
 
Oct 01
0

On the wine tasting

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Gosh, the wine tasting! We tried changing things up this year, but to be honest – this year’s wine tasting was a bit of a shambles. We were stretched in the weeks leading up to the wine tasting (having been away) and there was a bunch of things we didn’t do well (we forgot to ask for volunteers till the day before, we did it in the middle of the summer when most people were away, we gave everyone late notice etc etc) but despite the shambles, oh my days, what a great day.

This year instead of one giant tasting like a show, we had three small ‘stations’ where everyone stopped by as they went, with bubbles to start. It was a blind tasting, so each station had two wines, there was a Rosé station, a white station and a red station. Considering the heat of the day (thanks crazy heatwave) we did a chilled red (!) which was pretty fantastic. I obvs. loved the Rosé but I enjoyed the fizz and the chilled red too.

It was lovely to catch up with everyone as they came through – there was plenty of wine and we played a lot of ‘water vs wine’ (such a fun easy game). It was small, we intentionally kept the ticket sales small (and manageable!) but we had about 25 people come, we sold lots of wine and oh my days, there was lots of love.

On the day we raised £450 which is a phenomenal effort. Thanks to everyone who came and bought a ticket and drank our wine. Every single pound has such a profound affect on the research that can be done. All of those funds have been sent to Joseph’s Goal, who will send it along to Prof. Nick Greene for NKH Research. Honestly – thank you for the support for everyone who came with the crazy amount of love – thanks to you we’re making change. These funds – they give credence to what we’re doing, they give meaning to Mikaere’s life – he’s making a mark on the world with every single pound we raise in his name. I often mull over why we fundraise, and right now, that’s it. We want our son’s life to having meaning, to have made a difference. We want him to contribute to the world, and oh, how he is.

We’re lucky that we have this outlet in which to do that, so thank you for the love and support. You guys are the best x

May 14
1

On meeting Prof. Nick Greene

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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?