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Fia is in her reception year at Westfield primary school.
Fia loves the things all children her age love, fairies, princesses, music, playing, making friends.
However Fia has been diagnosed with Alexander disease.
Alexander disease is a neurodegenerative and currently has no cure.
A bit more on what Alexander disease is:
Alexander disease is an extremely rare, usually progressive and fatal, neurological disorder. Alexander disease has historically been included among the leukodystrophies--diseases of the white matter of the brain. These diseases affect the fatty material (myelin) that forms an insulating wrapping (sheath) around certain nerve fibers (axons). Myelin enables the efficient transmission of nerve impulses and provides the "whitish" appearance of the so-called white matter of the brain.
A bit about me:
I’m currently in my 3rd year of paediatric nurse training, I also work for Demelza and children with cerebral palsy. Helping any child who needs it is very close to my heart, and would love to help in any way that I can.
So I’ve set myself a challenge running 500miles for Fia. I will do this over the course of the year.
I am a novice runner, I only started doing a bit of running here and there in winter 2018, so this really is a challenge for me.
Any money that I raise along the way would be amazing!!
Funds are always needed for Fia and her family for various things;
Fia goes to the Evelina in London often and her parents often have to pay for transport and/or hotel stays
Medical/Mobility equipment if not covered by the NHS.
Home conversion to help the family manage Fia’s changing mobility issues.
Fia is also part of a research project in Philadelphia USA, so she occasionally will have to travel to the States (and find accommodation, expenses, etc).
Funds are also used for memory-making days out/trips/holidays for the family while Fia is able to enjoy them.
Please help me help this little girl and her amazing family, anything you can give will be appreciated, and I will post updates on Fia and how the running is going. Thank you.
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- 16 days ago
Aimee Taberer16 days ago
Hi, So far my total mileage is 8/500. I’m only a week in so far. I will get my 500 for Fia. Here’s the friends of Fia Facebook page if you wanted to keep updated on how she’s doing: https://www.facebook.com/fiakent/
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Aimee Taberer started crowdfunding
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Jan 23, 2019
Loving your big heart Aimee xx
Jan 8, 2019
Good luck Aimee. X
Jan 8, 2019
Super proud of you my friend! An amazing cause for such a gorgeous little girl! Xxx
Jan 8, 2019
Fantastic challenge for a great little lady xx
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