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Giuseppina De Novellis raised £242 from 16 supporters
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Closed 18/12/2017
Weʼve raised £242 to One day Sofia… Research without boundaries to cure Rett Syndrome
- Ilminster, United Kingdom
- Funded on Monday, 18th December 2017
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Story
I am a mother of three girls and one of them, the oldest, my Laura, is turning 6 this November.
About 5000 miles away in the east, there is another mum, Benedetta, and her little daughter Sofia, who is also 6 years old, just like mine..but not quite. Benedetta and her family are fighting every day, every hour, every minute against a horrible monster, a beast that is eating Sofia's life and that needs to be destroyed as soon as possible!
Sofia is a beautiful, clever and full of life little girl who, at the age of two, was diagnosed with a terrible Syndrome, the Rett Syndrome, that has trapped her into a body not willing to do what she wants to do! She can't talk, run, climb a step or use her hands purposefully, she has problem sleeping, eating and even breathing sometimes, but she keeps fighting, she still tries to be the little girl she is supposed to be.
The Rett Syndrome is a genetic disorder of the nervous system that causes regression (loss) of language and motor skills. Unfortunately at the moment there is no cure, in many cases the physical symptoms can be alleviated by occupational and physical therapies.
Following Sofia's diagnosis, their parents felt the compelling need of helping her and all the other children affected by Rett Syndrome, fighting the Monster and maybe one day destroying it for good. They decided to create 'One day Sofia', a no-profit association with the purpose of raising money for the Rett Syndrome medical research and of supporting all the people affected by this syndrome.
Updates
1
- 6 years ago
Giuseppina De Novellis
6 years agoI just wanted to say a big Thank You to all of our supporters! You have been so generous, we are blessed to be around such amazing people ❤
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Supporters
16
Roxy
Nov 20, 2017
Happy Birthday! Thank you for a lovely party. Roxy xx
£10.00
Anonymous
Nov 19, 2017
Thank you very much to the lovely kids what have donated at Laura's party ❤
£40.00
Emma King
Nov 18, 2017
Happy Birthday Laura, you are a very special 6 year old donating your birthday for your friend. Love Edith x
£10.00
J lock
Nov 18, 2017
Happy Birthday Laura, have a fab party. Great idea to fund raise.Grace x
£10.00
Helena Murray
Nov 18, 2017
Happy birthday Laura! Alexander Murray x
£10.00
Anonymous
Nov 17, 2017
Happy birthday Laura and welldone for choosing to donate like this. ❤️ Xx
Theo Pedder
Nov 17, 2017
Happy birthday Laura! So kind of you to raise money for such a good cause. Love from Theo x
£10.00
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