52 Lives

#99 Josey

Request: Gifts for her bedroom / a painter / donations / a treat for her parents

This week, we want to help change the life of a 14 year old girl from Hull called Josey. Josey has Canavans disease - it is very rare inherited disease that damages the ability of the nerve cells in the brain to send and receive messages and results in the slow degeneration of her brain.

Josey can only communicate through eye movement and noises. She suffers with spasticity in her legs and arms as well as a curved spine which is causing her lots of pain. She also has seizures and very poor vision so is registered blind. Josey has feeding problems and gastro-oesophageal reflux.

Despite all her many challenges, Josey is a typical 14 year old - very smiley and cheeky, has a crush on Chris Hemsworth, loves music, art, her brother’s dog and her little sister. Josey did love going to school but is unable to go now. It is a struggle just to get her out of the house because of all the equipment she needs. She spends a lot of time on her IPad, as this is the only device or toy she is able to use due to her mobility.

Her parents left their jobs to care for their daughter full-time. The family support worker who nominated Josey describes them as such proud and caring people whose main aim in life now is to keep Josey comfortable, happy, free from distress and out of hospital.

Josey’s condition will continue to deteriorate and she already spends the majority of her time in bed, as this is the most comfortable for her. But her bedroom is in poor condition, and has also become the family's main room as they don't like to leave Josey on her own. Her parents have been trying to save up to improve it, but most of their money goes on essentials, such as Josey’s medical equipment, clothes and bedding (which regularly need to be replaced).

This is a family in desperate need of kindness and, with your help, we want to do something special for them.

What We Need

1. Gift so Josey can redecorate her bedroom
We have set up an Amazon wishlist for her, filled with all the things Josey and her mum chose. To buy an item from the list, please click the link below.

2.  A painter/decorator or donations towards one
Josey's room is in need of painting. If anyone knows a kind painter/decorator who might be willing to donate their services, please let us know. Or if you would like to make a donation so the family can hire someone to do the work, please click the donation button below. (If we find a painter/decorator, any donations made will be put towards helping the family with their living expenses).

3. A treat for Josey's mum and dad
Josey's family support worker told us that doing something kind for Josey's parents would make their day. We are open to offers! But it would need to be something in the Hull or East Riding area, as they can't leave Josey for long....perhaps afternoon tea, a spa break or something similar. Please get in touch using the form below if you can help.

Buy a Gift from Josey's Wishlist

Make a Donation towards a painter

What We Did

Thanks to all of you, in just hours we almost had everything they needed to create a beautiful new space for Josey, including:

We also had offers from various people and businesses, which meant we could also give her family:

Thanks you everyone who like, shared or offered help. A special thanks to Tina Penn, Wendy Keep, Margaret Morton, Rebecca Collett, Alison Riley, Anna Unthank, Adam Banks, Sally Wellington and Jeff & Jean Taylor. Plus the other 50 beautiful strangers who made a donation on her page. I wish I could name you all. And thank you to Lucy Wood for nominating Josey.

And, as always, the reason that we are able to make sure that 100% of what you give goes directly to the person in need of help is because of the generous support of Gala Bingo whose generosity helps to keep 52 Lives running.


We've received photo of Josey's finished bedroom! Thanks to She Paints She Decorates for stripping and decorating the walls, Dave for plastering, Kim and Kev for fitting the lights, and the lovely team at Wish Upon a Wall for painting the mural. You've made a young girls' dream come true.