Started by a family, for families, and now shaped by families
The Jessie May Trust was established by parents Chris and Philippa Purrington following the death of their baby daughter, Jessica May, in September 1994.
Jessica died from a genetic condition known as severe Spinal Muscular Atrophy when she was only 4 ½ months old.
Jessica was cared for by her family, in her own home, throughout her illness.
She died peacefully at home in her father’s arms; in privacy, with dignity and surrounded by all those who loved her.
Jessica May Purrington, 12th May 1994 – 24th September 1994
During a visit to the family in Bristol, Jessica was admitted to the local children’s hospital in Southmead. It was here that the family learnt that the incredible support that they received in High Wycombe was not available to families who care for their child at home in the Bristol area.
The Purringtons were determined to do what they could to make sure that other children with conditions like Jessicas, and their families, could access support in their own homes and have the choice to die at home when the time comes. After a lot of hard work and perseverance, initial funding was secured and Jessie May was officially launched in 1996.
We provide at-home, qualified respite nursing care to children with life-limiting or life-threatening conditions and their families. We also support our families when their children are hospitalised. Our nurses get to know the children well, so that understanding, coupled with their medical training, means that they’re uniquely well placed to provide the advocacy that’s often missing in an often stressful hospital setting.
We also run family engagement events, where families can meet and network, children can play and have fun, and the Jessie May community can make memories together.
Over the last 30 years the charity has supported over 300 children and their families across Bristol, South Gloucestershire, North Somerset, Bath & North East Somerset, and Swindon & Wiltshire.