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#teamMikaere

Mar 02
0

On The Charity Quiz

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I feel like we’ve got a few charity fundraisers under our belts now, but the quiz was one of my favourites – a proper good fundraising event. People came, we had a great time, we made lots of money for NKH Research.

It was a fantastic afternoon. We had two fab quiz masters (thanks Tony and Tess!) – who provided several rounds of hilarity. Some questions required some thinking but there was enough knowledge in the room that the questions could be answered (because there’s nothing worst than a quiz where you can’t answer any questions). There was a round about music, and pictures with landmarks and general knowledge. Lots of delicious pop culture questions (I’m no good at knowing the answers but I still enjoyed those rounds the best).

We even had a round about Mikaere and NKH – because how better to raising awareness about a rare disorder than making people answer questions about it? I did a bit of a spiel at the beginning of the quiz and later pulled all my questions from that content. However, there was a slight blunder when I gave an answer in a question. Faaaaail. Quiz master I’m not. It was great though, people were kind when I messed up. They also must have been paying attention, because most teams got all the questions right! High five for awareness, hey?

We had a great turn out, maybe 40-50 people? I love fundraisers, if only because our nearest and dearest make the effort to come and support all the things. It also meant that since the Quiz Mastering was taken care of by Tony + Tess, the bar by Sam + our friend Gareth managed the bar, once I’d got the food sorted (which was nothing fancy – mini cheese boards and pizza pinwheels, one for each table, assembled not even by me but by helpers (thanks Hari and Becky!!) I got to sit with Mikaere and chat. Full, proper conversations, with adults, actual friends, with nowhere else to be. (Isolation: it’s a thing). I drank my full of social goodness, it was amazing. So many wonderful people came – we’re blessed. Seriously.

Thank you to everyone who came. You guys are the best. We’re also thankful to Chris and Majestic Wines in Putney for helping with the wine/beer. We’re grateful and even more grateful to the people who bought it (it made for a very cherry winter afternoon).

Thanks to everyone who donated the prizes and the items for the raffles. Thank you to Tony and Tess for organising and for the generosity of everyone on the day. We managed to raise £1450 on the night, which will be matched (!!!) to a total of £2900. Not bad for an afternoon, hey?

These funds are all going to Joseph’s Goal to help towards NKH Research, and the gene therapy work done by Prof. Nick Greene in progress at UCL.

We’re so hopeful for a gene therapy cure. Thanks everyone who came for helping with that hope – we love you guys. What an amazing afternoon. Stay tuned for more fundraisers throughout the year. We’re thinking the next one should be a wine tasting – who’s in?

Feb 08
2

On eating and diets and feeding tube awareness week

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It’s Feeding Tube Awareness Week this week – it’s where I’m allowed to shake my fist at strangers for looking so horrified when they realise Mikaere has a tube in his face. They go from smiling in anticipation as they peer into the depths of the buggy to pulling a face and looking away, not making eye contact. Or there will be the weird whispers (I can HEAR YOU) about how ‘that baby has a tube in his face’.

Kidding. I won’t shake my fist but I will give an epic death stare.

My kid has a feeding tube, yes. Bar three glorious/terrifyingly difficult weeks before he went into his seizure coma, he’s had one his entire 15 months. Without his tube there would be no eating, no meds and no thriving. That’s what the tube is there for.

I’ve talked about Mikaere’s NG tube before. How it works, what it does (delivers medication and food into his belly, by passing his mouth/throat. Which means it’s got nothing to do with breathing – probably the second common comment after the obvious ‘theres a tube in his face’). I’ve also talked about how we’re still waiting for the next step – a gastrostomy (where of instead of down his throat a tube will go through his abdomen straight into his belly).

I’ve even talked about safe feeding, and how a few months back Mikaere was so ill, it wasn’t safe to eat and he was declared nil by mouth. I’ve never been more grateful that Mikaere had a tube where we could still feed him.

As it stands, Mikaere is a different kid today. SO different from that sick little baby. His swallow is awesome and safe he’s protecting his airway like a CHAMP. He’s eating maybe half his feeds orally.

However, the things Mikaere is eating isn’t like a neuro-typical kid. No finger foods. Nothing solid. It’s all pureéd goodness and formula. Also… as a side effect of him being super ill beginning of December, Mikaere lost a lot of weight.

He’s been gaining, but he’s not anywhere near where he should be. As an example: Mikaere is height wise in the 98 percentile range. He’s LONG. Super long. Or tall, I guess is what you’d say if he was standing upright. But weight wise, Mikaere is below the 25 percentile. He’s skinny. He’s lost all his baby weight.

So we saw our nutritionist and looked over his diet, and while we’ve introduced purées it’s not been quite enough.
Our dietician has suggested an older kid formula equivalent with more calories… but it feels less like a formula and more like a “nutritionally complete” chemical liquid stored in tiny plastic bottles.

Other neurotypical kids aren’t on it, why does Mikaere need to be? So instead of chemically made up formula, we’ve been stepping it up. I’ve started introducing other things. Calorie dense foods. Avocado. Cream. Cheese. Honey. Chocolate mousse (that one goes down a treat). He often gets a pudding after meals. The calories, they are going in. Take that, nutritionally complete chemical formula.

Having that conversation with our dietician wasn’t particularly easy. When I talked about a blended diet she practically panicked and said ‘let’s not be too hasty’. But here’s the thing – when I start weaning Mikaere off formula, I’m not going to replace it with chemical milk. I’m just not going to. I hate the idea of feeding it to him.

I know that the blended diet is controversial (apparently the tubes aren’t made for blended food… only formula. Does that not sound like the biggest line of bs ever? If it is blended correctly it’ll be fine and unlikely to block the tube). But as far as I can tell, considering that Mikaere is eating part of his meals orally, we’re headed for a blended diet.

Which is to say, a blended diet through a tube. No formula. No weird replacement chemical milk.

And I know. I know this isn’t a thing you usually have to think about it – unless you’re knee deep two feet all in the world of special needs, tubes and feeding and weird chemical older kid meal replacement formula are not things you need to think about.

So, in the interest of Feeding Tube Awareness Week – next time you see a kid with tube, please smile and say how cute they are. When you see a parent feeding a child with a syringe through a tube that goes into their belly – don’t look away. Smile at them. Go say hi, say that the green goop looks delicious and their kid is the most adorable you’ve seen. If going up to talk is too much, just meet their eyes and smile.

I promise it’ll make their day.

 

Jan 22
1

On honesty in fundraising

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Last year I got blasted on Facebook when a family were fundraising for an item that didn’t do what they said it did. I got really excited when they said this item helped reduce the frequency of seizures. When I asked about it, it turned out it’s just a sensory toy and has no effect at all on seizure activity.

Maybe my moral compass is a bit more north than other people’s, but when it was clear it didn’t do what they said it did I very politely suggested they change the description to be more accurate. Needless to say that suggestion was followed with a lot of name calling and sarcastic bs. I stopped following the thread after the second stupid comment and left the keyboard warriors to it.

It’s a tricky thing, because I feel like when we fundraise it’s so so so important we’re transparent and honest. That when we come to you, our family and friends to ask for help – it’s important to us that you trust us. That we’re as transparent as we can possibly be. We’re so grateful for the love and support and the donations and I want you to know we respect and are grateful for every donation given.

Because of that, we always try to be very clear where your donation is going.

When we say the proceeds are going to Joseph’s Goal for NKH research they are. They’re delivered directly to Joseph’s Goal via justgiving or mydonate (if giftaid is available) or straight to their bank account if gift aid is not.

When we say they’re going to Mikaere, they are. We have a bank account that’s set aside for his therapy costs and it’s only used for what we said it would be (in this case neurofeedback therapy and QRI/LLL therapy) and that’s it. Your money goes where we said it would, no if’s or buts about it.

When we choose therapies to fundraise for, it’s because we’ve spent so much time researching through half a dozen different options for the ones that will provide the most benefit for Mikaere. Reading endless papers and articles and reviews to make sure there is some evidence that supports the benefits, that the risks are minimal, if not nonexistent. So when we say we’re fundraising for neurofeedback therapy and QRI/LLL therapy – it’s because we’ve done the ground work and there are case studies and research that suggest it’ll help.

Even if some of it seems a bit woo-woo. It’s at least woo-woo with some nice evidence based research to back it up.

What we will never do is lie about what the therapy does. If it does not help with seizures we will not say it does. If its not scientifically backed we will not say it is (though, let’s be honest. This is us. All of Kai’s therapy is scientifically backed!)

It’s important to us that we’re honest. Any donation you make goes exactly where we’ve said it will, to therapies that are evidence based and (will hopefully!) help what we’ve said they will.

We raised over £50,000 last year. We don’t have exact numbers, but a good guess would be about £53,589.50

£49,620.50 went to Joseph’s Goal. We get a spreadsheet every month with a breakdown of how much they’ve received, and from what campaign.

Joseph’s Goal sent £85,000 to Nick Greene and his team last year, which will be used towards gene therapy specifically for NKH. Isn’t that amazing?

It’s been a huge confidence booster that our fundraising has helped. That we’ve had a direct affect on the research that can be done. It feels like we’re helping. Like we’re doing something. Like we’re not taking NKH lying down.  It gives us hope.

We’ve raised approximately £3970 to go towards Kai’s therapies. That’s not a small amount, hey. That’s quality of life changing stuff. We’re using the first of it for the LLLT laser, closely followed by neurofeedback therapy (due to start after that pesky gastrostomy comes through).

Most of all I just want to say thank you. Thank you for trusting us, thank you for the help and the love and support. Thank you for everyone that’s bought an Eva book, ran an event, or donated to Kai’s campaign. Thank you everyone who has bought a ticket to the Charity Quiz and came for the fun.

We couldn’t have raised this much money without you. We couldn’t have made such a positive change in the research that can be done with NKH without you.

You guys give us hope. Thank for the love. You guys are the best.

Oct 18
0

Kai’s First Birthday Party

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On Saturday we had Kai’s first birthday party. It was amazing!! We went with a super hero theme, it seemed appropriate. We invited a few friends down to our local cafe we’re we’d booked a room. We had decorations and bunting. I spent a lot of time trying to convince people to help us eat all the candy at the Candy Bar (too much candy is never a terrible problem to have) or to help us eat the cake (again: too much cake, possibly the BEST problem to have).

Kai, unfortunately had a bit of a down day and ended up sleeping through his party, but we had a great time. There were lots of people we adore and hadn’t seen in a while. Special shout out to Ben and his family who came. Ben is another NKH kid, and it was AMAZING to have you guys come up to see us!! It was also super nice to have the Duff Club back together for a bit too (heart you guys for staying late and helping us clear out – you guys are the best!).

Thanks to everyone who came, we had a lovely time. I’m glad we managed to celebrate. 

Here’s the other thing. This birthday marks a year of fundraising for an NKH Cure. We support Joseph’s Goal and Prof. Nick Greene with UCL. Of course we do. They’re the closest to a cure. They have mouse models and are pursuing treatments that would affect a large proportion of the NKK population, not a select few. Fundraising for a cure seemed like the best way forward for Kai’s long term future.

Except that now… now that Kai is much older his disabilities are more pronounced. He needs more support, and to be frank: the NHS is sorely underfunded. The conservative government is still pursuing austerity measures that are absolutely affecting the most vulnerable of us – those cuts have meant services pulled back for Kai. We’ve rallied and are paying out of pocket for what we can (like weekly physio sessions and bath equipment so Kai can bathe safely), and are talking to charities about funding others (like a lyrcra DMO suit to help prevent scoliosis and weekly osteo sessions and additional medical equipment like syringes and NG tubes).

Recently we came across two treatments we think will help Kai – they’ve both already had outstanding results in other children with NKH. We hope that with them, Kai will have a chance at hitting some of those developmental milestones we’ve missed (like head holding, sitting, and if we’re really getting our hopes up, walking and talking).

The first is Quantum Reflex Integration with Low Level Laser Therapy. It’s done at home, and requires the purchase of a laser (which costs up to £5000). This treatment will hopefully help with some of those developmental issues.

The second is Neurofeedback Therapy – this is done at a local clinic in Battersea. Neurofeedback uses an EEG to assess Kai’s brainwaves, and the therapy provides sensory feedback (with music or vibrating cuddly toys), to encourage a more stable brainwave pattern. We hope this help with raising Kai’s seizure threshold, hopefully reducing the number of seizures he has. To be effective, it’s been suggested we do at least 20 sessions, which will cost up to £1600.

Two treatments we think would be game changing for Kai that we can’t afford to pay for ourselves. How heartbreaking is that? That there are things that could help Kai that are denied to him because of something stupid like money?

And so for us it makes sense to stop, temporarily, fundraising for Joseph’s Goal and to start fundraising directly for Kai and what Kai needs.

We know we’re asking a lot, but we can’t afford these treatments out of pocket. It’s especially hard to see other children having success with these treatments and not be able to do the same for Kai.

So. We’ve switched our focus from Kai’s long term needs (like a cure from Prof. Nick Greene) to his short term needs (QRI LLLT and Neurofeedback Therapy).

And I know we ask often, and we ask a lot. We plan to hold a lot of fundraisers in the next few months to help us, so keep an eye out for those. But if you’re able: please donate something for Kai’s Birthday. Anything would be very much appreciated.

 

Donate for life changing treatment for Kai

As always, we know we’re asking a lot. So thank you to everyone who has already donated, thanks to everyone who has already helped. We’re really grateful to have such a supportive village around us. You guys are the best. We love you!

x

Oct 04
0

Kai 101: The medical team

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I’ve said it before – Kai’s disorder is complex. And the NHS is incredibly siloed, so we have a huge, huge medical team. Everyone has their little speciality, and everyone has their own plan and requires their own appointments.

Our main team consists of:

  • A metabolic consultant, at Great Ormond St Hospital
  • Two neurologists, at our local hospital
  • A palliative care consultant, at our local hospice

They are the people that order all the things for Kai. But, they’re supported by a much larger team:

  • Our GP
  • Our Community Care Nurse
  • Our Health Visitor
  • An NHS Physio and a private Physio
  • An occupational therapist
  • Speech and Language consultant
  • A general dietician, and a metabolic dietician
  • An orthopaedic consultant
  • An ophthalmology team (at a different hospital)
  • The Gastroenterology team
  • Two night nurses, and a day carer

That doesn’t include the people who help, thanks to charities we’ve been referred to, like:

  • A hospice nurse, and a hospice carer
  • A hospice keyworker
  • A portage play therapist
  • Two Homestart helpers
  • An Early Years support worker
  • A benefit and fundraising support worker via contact
  • A Rainbow Trust support worker

That’s a team of 28+ people. For Kai and all his funny little complex needs. It doesn’t include people in the A&E that we know and love, the people who work in our pharmacy and deliver the meds, or the receptionist at our gp’s office who coordinates so much so I don’t have to. Or the people who supply everything, like the giving sets or the oxygen tanks.  It doesn’t include the people we’ve said goodbye to, like our NICU team.

We see multiple people on the list every week – though typically I’ll try organise all the appointments between Tuesday – Thursday, giving us a few days to just… be us. To spend some time outside the world of medical everythings.

Here’s the thing though – I haven’t met anyone on our team who wasn’t taken with Kai. Who hasn’t loved him, and wanted to have a cuddle, and love on him.

We’re really lucky, in that respect. That our team know who they’re working for, that they’re warm and on Team Mikaere.

Hopefully, we’ll eventually be able to cut down on our services that we need as Kai grows and becomes more stable. But till then, we’re pretty happy with our team.

Jul 17
0

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.