52 Lives

#276 James and Gracie

Request: Donations / Gifts from a wishlist / Messages

This week, we’d like to help a 5 year old boy called James and his big sister Gracie.

When James was 3 years old, he was diagnosed with a rare genetic disease called Battens. It is degenerative, so he has already lost the ability to walk and talk, and will eventually lose his sight and the ability to eat. Children with Battens are not expected to live past their teenage years.

His mum , Diana, said: “I don’t think we'll ever get over what’s happening to James and we really are struggling with coming to terms with what he’s having to go through. It’s never going to be easy, but we have to take it day by day.”

Diana and her husband, Dean (who was working as a kitchen and bedroom fitter) both had to give up their jobs to care for James after he started to have regular severe seizures.

“He was in and out of hospital all the time and was deteriorating quite quickly, so we have both been looking after James and Gracie full time."

They are living in a council house, which is being adapted at the moment so James will be able to have a bedroom and wet room on the ground floor. When the work is finished, Diana and Dean would love to create a wonderful sensory-filled space for James, where he can feel relaxed – but money is very tight for them now, so it’s going to be difficult to get all the things he needs.

We’d love to help!

As well as helping James, we’d also like to do something for his big sister Gracie, who is 10. Gracie has been an incredible sister to James...she reads to him, helps to bathe him, and even helps him with his schoolwork.

“She adores him and wants to help so much, but I also feel like a lot has been taken from her. She has to stay with my mam quite a lot, as we travel every two weeks and James needs 24 hour care, so it’s been hard for her,” Diana said. "We’ve tried to be as honest as possible with her about what is happening to James, and she’s definitely struggled over the last year with her emotions."

Gracie’s room is also in need of decorating, which they haven’t been able to do since they moved in. With your help, we would love to do that for her. 

What We Need

1. Donations: We'll use your donation to help create a new bedroom for James, filled with sensory toys, and also to decorate Gracie's bedroom. Any funds we raise above what is needed will be used to help the family in other ways. 100% of what you give will be used to help them. To donate online, please click the link below. To donate by text, please use the details in the box below. 

2. Gifts from a wishlist: We've set up a wishlist filled with things for Gracie and James' bedrooms. To buy a gift from the wishlist, please click the link below. You will be taken to Amazon where you can choose a gift and it will be sent directly to James and Gracie.
(When you check-out, please tick the 'this is a gift' option. Please note, your address details will not be shared with the recipient. If the wishlist is empty, it means all of the gifts have been purchased already, but we'd love you to consider helping in other ways.)

3. Kind messages: This family is going through a lot, and we'd love to send them some kind messages. To send a message to Diana, Dean, James or Gracie, please write your message in the form below (only your message and your first name will be shared with the family) or you can post a message to: 52 Lives (Life # 276), PO Box 3154, Reading, RG1 9AT. 



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(if you are sending a message of support for the person we’re helping, there is no need to fill in your email address or telephone number)

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