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Kris and Sophie raised £1,210 from 38 supporters

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Closed 22/10/2017

0%
£1,210
raised of £2,000 target by 38 supporters

    Weʼve raised £1,210 to help support Dr Kurian's Gene Therapy Research into PLAN Neurodegenerative Disorder.

    Funded on Sunday, 22nd October 2017

    Don't have time to donate right now?

    Story

    Hi Everyone,

    For those who don't know me, my name is Aamira and here's my story.....

    I was born a healthy, happy baby until I started losing some of my motor skills when I was 18 months old and I was later diagnosed with PLAN, an Infantile Neuroaxonal Dystrophy which in short is a degenerative brain disorder.
    As time went on I began to deteriorate and soon after became wheelchair bound and gradually lost all my motor skills - this was fine with me, mummy always called me a princess and I was always treated as one!

    I really enjoyed going to school, spending time at my local hospice and spending time with my family and friends. I loved everything pink and loved nothing more than sitting listening to my boyfriend’s music (Justin Bieber!).
    The support and help I received from everyone caring for me was amazing, but unfortunately my condition was very rare, life limiting and there was very little research or understanding of my diagnosis.

    Sadly, over a number of months I became severely ill and very weak prompting many journeys with flashing blue lights, a gastrostomy, a catheter and numerous visits to different hospitals around the country.

    On February 10th 2016, aged 9 years old, I became very tired, fell asleep and I was taken away by the Angels.

    Please donate and help spread awareness of my rare condition and help all the other children with similar rare genetic gene disorder.

    Wish my step-dad and his friends good luck for The Tough Mudder that they are completing to raise money to support this (they will need it!).

    Thank You

    Updates

    1

    • Kris and Sophie7 years ago
      Kris and Sophie

      Kris and Sophie

      7 years ago

      Thank you everyone for your support via this page and donating directly to us - massive thank you to the guys helping with this great cause. Please wish us all Good Luck Brendan Diskin Nick Smith Steven O'toole Chris Nicholson Graham Picken Ceiran Smith Phil Metcalf Steven Fisher

      Share this update to help us raise more

    7 years ago

    Kris and Sophie started crowdfunding

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    Page last updated on: 9/19/2017 16.54

    Supporters

    38

    • Victoria Nicholson

      Victoria Nicholson

      Sep 19, 2017

      £150.00

    • Anonymous

      Anonymous

      Sep 16, 2017

      A little more towards the target...hope it helps!

      £20.00

    • Steven Otoole

      Steven Otoole

      Sep 15, 2017

      £50.00

    • Tracey Oliver

      Tracey Oliver

      Sep 14, 2017

      Good Luck guys! Sending lots of love -Tracey, Rob and Thomas Xx (And Alfie X)

      £10.00

    • joanna berry

      joanna berry

      Sep 12, 2017

      £10.00

    • Ed Lax

      Ed Lax

      Sep 11, 2017

      Good luck guys. Be careful of the electric shocks and make sure full risk assessments are carried out before taking part.

      £20.00

    • Elle Reece

      Elle Reece

      Sep 10, 2017

      £10.00

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