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"We're doing it for him" - Marc's story
Koa was born on the 29th of January, and got his heel prick test a few days later. He is our 3rd child so everything was as it was before, and we didn’t question anything.
I remember, I was at work and my wife, Zoe, called me and said a doctor was coming to talk with us about his heel prick test results. I Googled what it was used for and it brought up a number of conditions and I thought it was likely to be CF due to the timing of it. At the time I couldn’t understand what was going on because he looked so healthy, it didn't compute.
Learning about CF
I didn’t know much about CF before Koa was diagnosed and didn’t know it affected the pancreas and digestive system. It was an information overload, I couldn’t research enough. But I was looking at him and thinking he was perfect, so could it be wrong? I now know he’s still perfect, but his wee body just doesn’t work the same as mine.
I hadn’t known anyone with CF before, but my Mum didn’t act surprised when we told her because she said she lost two first cousins to it when she was younger - I had no idea.
It’s been tough adapting to life and journeying to the hospital regularly, the medication, getting into new habits. But we’re doing it for him. It’s been tough. Though I see bereavements on your social media channels and it humbles me every time and makes me realise how lucky we are.
Support
I spoke to Liam McHugh after we found out Koa had CF and he was a great person to speak to. I remember every word of the phone call. The first thing he said was “everything is going to be okay” and we’ve met a few times in person since then.
He inspired me to do my challenge a bit - I knew I wanted to do something for the Trust but wanted Koa’s diagnosis to set in first.
Our other two children are eight and six years old – they’re bright kids and very sympathetic. They wash their hands after being outside and know what to do and what not to do. They’re so considerate towards him and to me and my partner Zoe as parents. They see the stress it’s added to home life and we try and keep things as normal as possible for everyone. It’s quite a lot to juggle - work, three children, and adjusting to life with CF.
HYROX
I’ve always been really into fitness. I regularly go to the gym and HYROX has just really taken off around here. I Googled the record of how many had been done in this country in 24 hours and it was 12. I’m not a professional though so I thought 10 would be a good number.
To be honest, I hate running more than 1km! But I’m quite proud of the concept of the challenge and am looking forward to it.
I’ve done a few HYROX events and gone through hell but this isn’t about getting the best time, this is about doing the challenge and pushing myself. I have it structured to give myself breaks and I’m probably still going to be annoyed at myself, but Koa is my inspiration. I am looking forward to keeping him fit and healthy with exercises when he’s older.
When I first posted the link, it just took off – I couldn’t believe it. Within 24 hours I hit my £2k target and it is now at £10.5k. It’s amazing but quite scary too because now I know I have to do it. I just hope the weather is dry.
Marc's challenge will be taking place on the 23rd November.
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