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.