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Robyns Trust Retts Syndrome raised £9,234 from 194 supporters
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Closed 03/02/2018
Iʼve raised £9,234 to supply our daughter Robyn, a sufferer of Rett Syndrome, with an Eye Gaze system to enable communication outside the body she is trapped in.
- Warrington, United Kingdom
- Funded on Saturday, 3rd February 2018
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Story
Robyn April is 10 years old and she has a rare genetic disorder that occurs in 1 in 10'000 female births. The genetic mutation means a protein essential for the brain to send messages to other parts of the body doesn't function properly. Girls develop normally until they go through a period of regression and lose skills the ability to walk, ability to talk, use their hands and eat properly.
Robyn first showed signs that something wasn't quite right from 2 years old. Robyn wasn't meeting her development milestones. Robyn began to lose purposeful use of her hands and developed the repetitive and involuntary hand wringing and lost speech. Tests confirmed the news we were dreading.
Robyn cannot talk, dress or feed herself. Her walking is deteriorating rapidly. She also has low blood gas oxygen level which means she suffers apnea (holding her breath) to dangerous levels. Robyn will need 24 hour care for the rest of her life. The symptom of Rett make a normal and even most adaptive means of communication impossible.
One very reassuring thing we have learnt is that Rett girls are not brain damaged. They have the same mental ability as their peers, it's their body failing them and they are locked in, they simply cannot express themselves.
However they can control eye movement. Eye gaze technology and special software now mean communication is now possible. To give Robyn the best chance in life and the ability to communicate with her family and the world around her Robyn's Trust has been set up to raise money for an eye gaze computer.
Updates
11
7 years agoRobyns Trust Retts Syndrome
7 years agoThanks to all that attended Robyns Event last night. Thanks Soul Searchers & our wonderful helpers for dedicating an entire evening to us. Early indiciations show over £5k was achieved from bar & auction sales. However there are a number of outstanding payments. We’re overwhelmed to discover we exceeded our target and are now able to provide Robyn with both the Eye Gaze and stair-walker! For a little girl with out a voice, she’s taught us so much and managed to gain your support. We will keep you posted on her progress. Thank you all x💜x
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- 7 years ago
Robyns Trust Retts Syndrome
7 years agoJust want to thank all those that again got involved in today’s raising awareness for Rett and Robyns Trust. We achieved £282 in the charity buckets so thank you to all that gave. Ric’s Kitchen, Toni & Guy, Slug and Lettuce, Wasabi, Italian Express, Kelly’s Restaurant & Sorrelle, massive shout out to you all that have now joined many of the other business in Stockton Heath & Warrington in donating for this cause. Community spirit at its best. We look forward to celebrating with you all next Saturday at St Thomas Church Hall 630pm 💜💜💜
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- 7 years ago
Robyns Trust Retts Syndrome
7 years agoIm incredibly overwhelmed to discover our target is acheieved. I can’t see the screen for the tears, this is life changing. Gary Moore of Smiles and More I’m lost for words at your generosity. Every last one of you that have contributed & donated to make all of this possible, in setting Robyns voice free. I hope she’ll be able to thank you all herself soon. Will continue to keep you all posted through her progress. Please join us at the Church Hall 18th November & celebrate this milestone together. Thank you all, from a very emotional mum 💜💜
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Robyns Trust Retts Syndrome started crowdfunding
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Supporters
194
Zak & Rachel
Nov 28, 2017
An amazing little girl. All our love x
£100.00
Dave Evans
Nov 28, 2017
Fantastic cause, wish you all the best, from Evans Construction
£100.00
Jo Woods
Nov 20, 2017
Auction Chester Races
£50.00
Anonymous
Nov 20, 2017
From all at CR MacDonald Ltd
£100.00
Chris Kerfoot
Nov 20, 2017
COOVAR AUCTION BOB. FANTASTIC JOB GUYS KEEP GOING. ALL THE BEST
£100.00
richard mcalpine
Nov 19, 2017
I couldn't be there last night and was also out bid on the auction.
£100.00
Graham Dutton
Nov 19, 2017
£20.00
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