52 Lives

#179 George

Request: Donations for a seizure monitor / Messages

This week, we want to do something kind for a 5 year old boy from Warwickshire called George.

Until February of last year, George was a happy, healthy child who has just learnt to walk and feed himself. He began having seizures, and doctors thought he had developed epilepsy, but further tests showed has was suffering from Batten disease - a neurological disorder, which usually emerges in early childhood.

George’s condition is degenerative, so over time he will lose his ability to walk, talk, see and eat, and eventually become bed ridden. There is no treatment and there is no known cure. Children with this disease are unlikely to make it past their teenage years.

During the past year, George has rapidly deteriorated. He has forgotten dozens of words and lost the ability to walk and eat orally.

His condition is rare - so rare that George is only the second child currently in the UK to have his particular strain of the disease (CLN8).

George’s mum, Claire, said: “It’s horrible to see him being robbed of his childhood. You don’t expect it to happen to your own child. I just can’t believe what’s going to happen to my little boy.”

With your help, we would love to do something kind for George and his family.


(Photo courtesy of Andrew Craner) 

What We Need

1. Donations for seizure monitors: We would like to buy George a seizure monitor, so Claire can be reassured that he is safe during the night, and during his daytime naps. Any funds raised above what we need for the monitor will be used to help George in other ways. To make a donation, please click the link below. 100% of what you give will go to helping George. 

2. Messages for George and his family: To send a kind message to George or his family, please write your message in the form below (George has just started back at school, so maybe some messages of encouragement would be lovely!)...your email address will not be shared. Or to post a card or message, please send it to: 52 Lives (Life # 179), PO Box 3154, Reading, RG1 9AT.

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