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Zillah Abbt raised £230 from 9 supporters
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Closed 31/10/2017
Weʼve raised £230 to help a profoundly disabled 11 year old communicate with her family using a speech generating eye gaze system, which will transform her life.
- Funded on Tuesday, 31st October 2017
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Story
Jeremy and I are going to run the Great South Run (10 miles/ 16 Km) on October 22nd this year. It is a big challenge for me as I have only ran 10k before and my legs are not getting any younger! But Jeremy says that I can do it and he will help me. .
But my main inspiration is Ella. I met her and her family several years ago at Junior Park Run. She is the same age as our youngest son and she shows incredible resilience each time she completes the course. I always think of her when I am running and it gets really tough.
Along with other friends, we will be raising money to help Ella. Any donations, large or small will be greatly appreciated
This is Ella's story:
Ella is a beautiful, funny and loving 11 year old, but… she has Rett Syndrome.
Imagine the symptoms of Autism, Cerebral Palsy, Parkinson’s, Epilepsy and Anxiety Disorder… all in one little girl.
Rett Syndrome is a serious lifelong neurological disorder that is caused by random mutations in a gene called MECP2. Diagnosed almost exclusively in girls, symptoms typically appear at about 12-15 months. It is potentially a life shortening condition, but some girls have lived until middle age.
Ella is unable to speak or use her hands. She cannot sit down or stand up on her own or walk far without help. She has breathing problems, epileptic seizures, and scoliosis. However, we believe Ella understands her environment and what is said to her, but crucially has no way to respond. She is locked inside a body that simply doesn’t function properly.
Imagine not being able to ask for a drink when you want one.
Imagine being unable to sit down when you are tired and not being able to ask for help.
Imagine having a headache and not being able to tell anyone.
This is what it is like for Ella every day.
As Ella is unable to use her hands, using an eye controlled speech generating device has the ability to unlock her potential. Many girls with Retts have successfully used eye gaze systems to communicate. Using such a device, Ella would at last be able to tell us some of her thoughts, wishes and needs, which would transform her life.
Here is a great link to further information on Rett Syndrome and the use of the Eye Gaze systems: http://rettuniversity.org/
https://www.tobiidynavox.com/en-GB/users-conditions/user-conditions/rett-syndrome/
Updates
3
- 7 years ago
Zillah Abbt
7 years agoShare this update to help us raise more
- 7 years ago
Zillah Abbt
7 years agoThank you everyone for your generous support both through crowd funding and donations. So far we have raised £275 towards the £10,000 total needed to fund Ella's Voice and with all the other people working towards this cause, her family will soon be able to celebrate 🎉
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- 7 years ago
Zillah Abbt
7 years agoIt's just over a week until the big run now. I've been working hard trying to prepare my legs so I can cover the distance on the day. On Sunday, I managed to run the 16k in about 1:50 minutes but the last 5k are quite painful and will be the bit I worry about most. Jeremy reassures me that I will be fine on the day and I know that thinking of Ella will definitely spur me on. Thank you everyone!
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Zillah Abbt started crowdfunding
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Supporters
9
Anonymous
Oct 28, 2017
Well done!
£50.00
Anonymous
Oct 23, 2017
£30.00
Julia Newnam
Oct 12, 2017
Good luck Zillah! x
£5.00
Nicholas White
Oct 8, 2017
Go Zillah go you can do it, we saw that today! Love Carokyn and Nick xx
£20.00
Anonymous
Sep 4, 2017
£5.00
Huong Giang Nguyen
Sep 1, 2017
What a wonderful thing to do Zillah and Jeremy. Best of luck xx
£20.00
Katie Hilditch
Sep 1, 2017
You don't need any luck, you've got an inspirational little girl spurring you on! x
£30.00
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