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.
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.