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I was a teenage TOF!

Meet Matilda and experience what it's like being a teenager with OA/TOF.

I’ve been through a lot…apparently.

Most of my surgery and medical problems have been solved and much of it happened so early on that I remember pretty much next to nothing. 

Which is probably a good thing.

Matilda with her mum

For some reason I remember the strangest details. I had a tube through my nose, but I’ll get back to that later.

I adore pasta, (that may seem a bit random, but stay with me here…) and because I love it so much, when I eat spaghetti, somehow I get it down my nose.

You know how you sometimes take a gulp of lemonade or tea and you laugh and end up snorting it all over the place? (No…just me?)

Yeah, I do that with pasta… Getting a strand of pasta down my nose is exactly the same feeling of the tube down my nose. It’s a feeling that you never really get used to.

My parents told me that when I was little I used to try and pull out the tube all the time – my mum would whip out her camera, take a photo of my proud face and put my tube back in. 

That’s in the past now. At the moment I’ve got my GCSEs to worry about. Instead of trying to remember what medicine to take, I have to remember the advantages and disadvantages of wind turbines and how to solve simultaneous equations.

Being a teen TOF, I keep reminding myself how lucky I am to be alive and to have a family who love and care for me. My surgery is all fixed, but it doesn’t mean that everything is perfect. I frequently get acid reflux and I’m prone to colds, but it’s nowhere near as bad as it used to be.


It feels like I’ve talked about myself too much now, so I’ll just wrap this up with tips I’ve learnt from being a TOF:

Matilda's tips

Eat a rainbow everyday – and no, it doesn't mean eat all the colours of gummy bears. A rainbow of vegetables and fruit every day, it sounds better than ‘five a day’.
Try and see humour and happiness in everything – positivity makes everything better.
Do what you love – I remember when I was in hospital I was always drawing & making things. I still draw and craft things constantly, it's what makes me feel happy. Don't let anything stop you.
Learn about yourself - when the operations were, why you had them. I have quite a collection of scars, and while it seems normal to me that I have my stomach in my chest, to others it seems amazing.
Have hope – sorry to be cheesy and clichéd but it's true. There's always a light at the end of the tunnel. Hope can make a world of difference.
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I am not an expert in anything apart from procrastinating – I’m just a teenage girl who survived what happened in my childhood. 

I just wanted to pass on a few things that I’ve learned…wow I feel wise and old! 

If this helps even one person it’ll be enough for me.

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