Weʼve raised £1,210 to help support Dr Kurian's Gene Therapy Research into PLAN Neurodegenerative Disorder.
- Health and medical
- Time left
- Funded on Sunday, 22nd October 2017
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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!).
- 6 months ago
Kris and Sophie6 months 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
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Kris and Sophie started crowdfunding
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Sep 19, 2017
Sep 16, 2017
A little more towards the target...hope it helps!
Sep 15, 2017
Sep 14, 2017
Good Luck guys! Sending lots of love -Tracey, Rob and Thomas Xx (And Alfie X)
Sep 12, 2017
Sep 11, 2017
Good luck guys. Be careful of the electric shocks and make sure full risk assessments are carried out before taking part.
Sep 10, 2017
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