52 Lives

#138 Caleb

Request: Gifts / Donations / Messages / Weekend Break

This week, we would like to help family from Leeds, who have had a very tough few years.

Lynsey and Duncan have 2 children who were both diagnosed with a rare condition called Late Infantile Batten Disease. It is degenerative, so they knew that over time they would watch their children lose the ability to walk, talk, see, eat and eventually become bed ridden. There is no treatment and there is no cure. Children with this disease are unlikely to make it past their teenage years.

Lynsey and Duncan's eldest child, Ellie Mae, started having seizures when she was a toddler and she was falling over a lot at preschool. She had a lot of tests to try to work out what was wrong. While they were going through that process, their son Caleb also started having seizures. 

Lynsey said she can remember it like it was yesterday - he was in back of the car and she saw him in the mirror, and knew straight away he was having a seizure.

In February 2014, they were given the devastating news that both of their children had a form of Batten disease. Ellie Mae sadly passed away the following year, at just 6 years of age –  the same age Caleb is now.

Caleb is now slowly losing his ability to do everything, and his parents are trying to do what they can to bring lots of joy into his life and to get the things he needs to improve his quality of life. 

They have also been doing a great deal of fundraising to try to raise money for research into the disease. They know it wont be able to help Caleb, but they are hoping it might improve the lives of other children in the future.

This is a family that has been through so much heartache, and we want to do something kind for them.

What We Need

1. Gifts for Caleb - There are a few small things that Caleb would like, which we have added to an Amazon wishlist. To buy a gift, please click the link below. Gifts will be sent straight from Amazon to Caleb. 

2. Donations - They would absolutely love to be in a position to buy a hot tub for Caleb to use at home - he really enjoys being in the water and being outside so this would tick two boxes!  Any money we raise above what is needed for the hot tub will be used to buy any other things he needs and also to give his mum Lynsey (who is his full-time carer) a little break away if we can. 

3. A weekend break for his mum - We'd like to be able to send Lynsey for a mini break somewhere not too far from home. If your company, hotel, or B&B can help with this, please let us know by completing the form below. 

4. Kind messages - So many times, the people we help say that the messages they receive from our supporters mean more to them than the things we give them. A few kind words can make such a big difference. If you would like to send the family a message of support, please email it to admin@52-lives.org or post to 52 Lives (Life # 138), PO Box 329, Hampton, TW12 9DF.


What We Did

Thanks to all of you lovely people, this is what we did!

- Raised almost £1200, which has paid for a hot tub for Caleb’s therapy and also a portable hoist to help him move around more easily.

- Donated more than £300 in Amazon gifts and gift cards for Caleb.
- Sent Caleb’s mum on a night away in a beautiful hotel. Thank you so much to Nicola at Mallyan Spout Hotel near Whitby for donating a beautiful room, dinner and drinks for Lynsey. It was a much-needed break and she is so grateful to you.
- Gave Caleb an amazing personalised story, thanks to a talented children’s writer called Polly Churchill. Polly saw Caleb’s story and wanted to do something for him. She gave up so much of her time to write a story about Caleb, based on all the things he loves, and even recorded an audio version for him, with the help of Jemma Churchill and Marlon Percy.

- Sent dozens and dozens of beautiful cards and messages for Caleb – a huge thank you to the children at Carlisle Infant School in Hampton, Jean St Arnauld, Debbie Walker (for her gorgeous gift) and the Gately family.

Thanks so much to everyone who sent a gift, made a donation or sent a lovely message. And thank you so much to Lucy for nominating Caleb and for helping us to arrange everything.

Your kindness really has made this little boy’s life so much better.