Family praise 'invaluable' children's hospice

(L-R) Greg, Margot, Vic and Mimi are supported by the hospice charity, Jessie May

A family that is supported by a children's hospice has said its help is "completely invaluable".

Bristol-based charity Jessie May provides specialist nursing care at home to children with life-limiting and life-threatening conditions.

The charity supports Margot, a four-year-old with the rare genetic condition Mosaic Trisomy 9, which caused some of her cells to form with a third copy of the ninth chromosome and left her unable to eat or drink orally, talk and physically support herself.

Greg, her father, said: "I can't imagine life without Jessie May – they have become an integral part of Margot's life, our lives, and they give us that huge love and support that is invaluable."

Margot's mother, Vic, said nurses from the charity provide the family with three-and-a-half hours of "respite" care through two visits every month.

While the nurses look after Margot, Vic said she and her husband run errands or spend one-on-one time with their six-year-old daughter, Mimi.

Vic said Margot loves spending time with the Jessie May nurses

Greg said: "You've only got to see in terms of how [the nurses] have integrated with our family and the development and support they give Margot."

Vic added: "She's unable to do many of the things that a typical four-year-old is able to do.

"That being said, she is a gloriously happy little girl and although she's non-verbal, she's able to communicate beautifully through facial expressions."

Jessie May nurse Lois said the charity's at-home care was "vital".

"Many families don't realise how much hospice care extends beyond end-of-life support.

"Our work in the home gives children like Margot a chance to grow, learn, and enjoy life, while giving parents the reassurance and breaks they desperately need," she added.