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£430raised of £1,000 target by 19 supporters

Weʼre raising £1,000 to Katie and Megan's bucket list

Edinburgh, United Kingdom

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Story

My name is Katie and after being unwell since a first attack of encephalopathy in February 2014, when my then 17 year old daughter, who was diagnosed with autistic spectrum disorder at age 6, saved my life by making her first ever phone call to a stranger to get me an ambulance. I was eventually diagnosed with a rare encephalopathy syndrome and again after a recurrence 11 months later.

The picture above was taken June 2016 after something went wrong in my system and for 10 hours i had a minute long seizure every 10 minutes. The medication I had been given hadnt stopped the seizures and my body reached a tipping point where first my lungs began to fail, hence the induced coma and life support, then over the next few days off the ventilator my liver reacted and for several days my neuro team had to consult with the liver team as my liver was failing rapidly. This is where the picture is from.

The funny thing about the picture is that the first time I had wound up in a coma on life support I had not believed my daughter when she had told me about it. I simply did not believe her so whej it happened the 2nd time she snapped a picture as proof. This time it was not neefed as unlike the forst time when I had taken my time coming round this time i woke up in itu with all of the monitors, tubes and lines still in place.....I also owed my daughter my life yet again after she raised the alarm having found me fitting in bef.

Luckily the liver is a wonderful organ and was able to heal over the following month....but it was the first time I realised i was not getting back to anywhere near normal physically no matter how hard i tried and just reinforced the itch that the Drs were missing something..
A different neurologist brought up the possibility of me having a genetic condition at the end of last year. He had studied my notes in depth and thought my original diagnosis was not quite right. Less than 2 months later it became probable after my 3rd attack in January and my 4th in June. The last attack triggered seizures that just affect my eyes.
on the 25th of July I was seen by a world leading expert in mitochondrial diseases. There is no unit in Scotland where I live so I had to travel to Newcastle but not complaining because the unit there is so great. There i was told by Prof. Sir Turnbull that the only thing that could be causing my issues was a multi system mitochondrial disease which has left lasting damage to my brain and the nerves/muscles, mainly in my legs.
They took samples from my now 20 year old daughter so we have to wait to see if she too is affected..
I may be frail and easily tired, and we have no idea how long my brain can withstand these attacks so my time is even more precious and I want to make memories for my daughter so that the latter years of my life are not all going to be memories of my 'being poorly'
There are so many things I still want to do but unfortunately being on benefits doesn't give you any spare for even the smallest bucket list item....and given my frailty my bucket list ideas are all small.
I would be more than appreciative for the smallest donation to help me make 'fun memories' for me to share with my daughter no matter what the future holds. Its been a long few years of fighting back from each attack and its only going to get harder. I will fight my battles but I won't win the war and thats just the terrible nature of these diseases.

Thank you.

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Updates

14

  • Katie Hughes6 months ago
    Katie Hughes

    Katie Hughes

    6 months ago

    At New Year my mum turned 70....as a result my daughter and I got to do something I thought I’d never get to do and travelnput to where she lives in Canada 🇨🇦. We had an amazing time and even had a family photo shoot to celebrate Mum’s birthday. Unfortunately I’ve been tired after two bouts of encephalopathy last year and it doesn’t ease up...it’s like my batteries only charge up to about 20% these days.

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  • Katie Hughes1 year ago
    Katie Hughes

    Katie Hughes

    1 year ago
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  • Katie Hughes1 year ago
    Katie Hughes

    Katie Hughes

    1 year ago

    Me rocking out the permanently tinted glasses I now need to protect my eyes from simple daylight. Thanks to my daughter for donating frames she wasn’t using so they were completely free and I can now have the curtains opened as I rest on my bed...no more heavily darkened rooms to stop my eyes getting watery and sore and giving me a headache.

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1 year ago

Katie Hughes started crowdfunding

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Page last updated on: 5/26/2018 1:35 AM

Supporters

19

  • Sophie Omond

    Sophie Omond

    Nov 1, 2017

    £10.00

  • Anthony Hughes

    Anthony Hughes

    Sep 24, 2017

    Just a little extra for you my love

    £50.00

  • Susan Duffin

    Susan Duffin

    Sep 17, 2017

    Hope you girls have the best time ever! Xx

    £20.00

  • Eilidh Harker

    Eilidh Harker

    Sep 8, 2017

    For fwo ladies that have helped me in my times of need, this is the least I can do just now

    £100.00

  • Aidan Bohan

    Aidan Bohan

    Sep 8, 2017

    £20.00

  • Anoosha Ismail

    Anoosha Ismail

    Sep 4, 2017

    Sending so much love to the both of you! Good luck 💜

    £30.00

  • Ezra Maguire

    Ezra Maguire

    Sep 4, 2017

    All I could really afford right now but hope it somehow helps you both make memories together, take photographs and cherish your time together always. In my thoughts and prayers- Ez

    £10.00

Katie Hughes

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About the fundraiser
Katie Hughes

Katie Hughes

Edinburgh, United Kingdom

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