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Help Alethia to see the world again

£1,113 of £5,000 goal

Raised by 42 people in 5 months
Created February 11, 2019
Team Alethia
on behalf of Emilia Greenfield
This is Alethia some months ago. She is a delightful, engaging and intelligent ten year old, living in Donington, Lincolnshire.

Last April (2018) something started to go very wrong, and she was in dreadful pain all over her body. Then she started to lose the ability to use her limbs, only to regain the use a short time later. For example, one day it was like she'd forgotten completely how to use and knife and fork and would need to be fed, only for the full use of her hands to return the following day.

The doctors were confused, ran all the tests they could, but they couldn't diagnose her illness. All they have been able to do is give her painkillers for her pain. 

For the last three weeks the symptoms of her illness seem to have stabilised, but this is not great news.

Alethia has lost all use of her muscles throughout her body, so she is now fully alert, able to see and speak, but she has to be put into position and propped up fully on cushions. She can't even move her own head. She also has short seizures every few minutes, so cannot be left alone, and is no longer able to tolerate noise, so often has to wear noise-cancelling headphones.

Alethia now lives in the family's living room and her mother has had to give up her job to care for her 24/7.

Alethia is blessed with a loving family and, despite this illness, she is still finding some joy in seeing her friends and their dogs (she is a MASSIVE dog fan!), but she hasn't been able to leave her home for weeks either for pleasure or for the essential hospital appointments that are crucial to her ongoing treatment. (The NHS cannot afford to fund a non-emergency ambulance to take her to hospital.)

This is Alethia with her puppy, Toby.
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Alethia desperately needs so many things to make life easier, and her family are doing their best to provide them, but her immediate need is for a car seat that is capable of holding her entire body completely still.

These styles of seats are expensive, have to be fully customised and she needs to go to the manufacturer to be measured and fitted. This means that her family also need to hire a private ambulance to take her there.

Alethia is such an adorable child, such a gentle spirit, and it would make her life so much easier if she can get out of the house again. She's far too young to understand how ill she is, and we all want to give her a better quality of life and full access to all the hospital appointments so that she can be healed as soon as possible.

Please donate whatever you can - we are all so grateful for whatever help you can give Alethia.
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Hello lovely people, it's time for a feel-good update!

Yesterday, the people of Donington, Lincolnshire came out in force to help support Alethia. After many weeks of preparations, the Bake Sale finally arrived. There were cakes of all descriptions, a raffle, face-painting and lots of kids activities. The whole of Alethia's family got involved and they were delighted when the final tally came to £669.10 for the cakes and, amongst other valiant fundraising efforts, a whopping £520 that was raised by the local Co-op!

Thank you to everyone that helped yesterday, and a big thank you to all the people who - despite not knowing anything about FND (Functional Neurological Disorder) - came along to help a brave little girl.

Yesterday has taken us considerably closer to our target, but whilst writing this update I looked at the recent donations and I'm amazed at how many people from all over the country have contributed. We are so grateful to you all - your donations are keeping Alethia's spirits up and we are getting closer to the day that we can say yes to her biggest request - a simple trip to the seaside - something that is impossible without the modified car-seat.

To all of you, near and far, we salute you and send our love and gratitude.
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Thank you to everyone for all the support we've received so far. Alethia is so touched and grateful for the help.

Things are moving for Alethia - some in the right direction and others not. The good news is that the referral to Great Ormond Street Hospital is progressing, but she hasn't yet been given any idea of when she will be seen by them - but it is a ray of hope that an answer and treatment can be found.

Last week we all decided to learn sign language, so when Alethia is unable to speak due to her 'dropped tongue', she can still communicate. We had great fun testing each other on with how to fingerspell lots of words. Alethia was especially keen to learn the signs for 'please' and 'thank you'; a testament to her impeccable manners.

We were testing our sign language on a trip to the dentist this week as we were in the waiting room. Alethia finds any noise and light uncomfortable, and sometimes even painful, so it was ideal to keep her mind occupied. She got a clean bill of health from the dentist - well done Alethia!

We are, sadly, nowhere near our target for a car seat for Alethia, which meant that getting her to the dentist was quite an operation. Mum drove, Mum's boyfriend (Ashley) carried Alethia in and out of the wheelchair and then packed it up into the back of the small family car, then I had to sit next to Alethia to hold on to her to ensure she didn't come to any harm. She would dearly love to go to the beach, but we don't know how we could do it at the moment.

At home, Alethia is spending time home schooling and also teaching her puppy, Toby, new tricks. His latest is to spin in a circle and fist-bump! He's a clever labrador and when he's grown, we're hoping he will alert us to Alethia's seizures, so we can keep her safe. One days soon, we're all hoping to introduce him to the beach - he's going to love it.
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£1,113 of £5,000 goal

Raised by 42 people in 5 months
Created February 11, 2019
Team Alethia
on behalf of Emilia Greenfield
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