Jessie May was just 4½ months old when she died from a genetic condition. Her family were visiting relatives when they learnt that there was no support for families like them to care for their children at home in the Bristol area. She died peacefully at home, surrounded by all those who loved her. Her parents were determined other families would have that choice, and launched the Jessie May Trust in 1996.
Now in its 21st year, Jessie May has grown significantly, working with around 130 terminally ill children and their families, including many young carers.
Jessie May helps siblings of terminally ill children with free respite support visits from their professional nurses. Many young carers help to care for their terminally ill brother or sister from a young age. For three hours at a time Jessie May's professional nurses take over the sole care of the ill child, giving parents and siblings quality time to be together, catch up, have fun - simple things which are hard to do, given the pressures of caring for a child with complex medical needs.
This helps build resilience to cope despite the enormous pressures they face. It gave young carers a break from looking after their brother or sister and the chance to have quality time with mum and dad - time when they have their undivided attention for a few hours. These are ordinary people, trying to live ordinary lives, but in the most extraordinary of circumstances.
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