A ROCKHAMPTON family shared their story with Samantha Cameron in a bid to gather support for the Jessie May Trust, the charity which has cared for their disabled daughter for a decade.

Wendy Britten, her husband Michael and 16-year-old daughter Sarah, who suffers from Rett Syndrome, were among scores of South Gloucestershire campaigners to be invited to 10 Downing Street by the Prime Minister's wife.

Jessie May Trust nurses have been supporting children with life-limiting illnesses for the past 16 years and the charity is now hoping to expand its model of care and reach out to families across the whole of the UK.

Helping the organisation in its bid, the Brittens told Mrs Cameron last Tuesday about the precious help they and their adopted daughter have received over the years.

"It's a debilitating disorder and she needs 24-hour care," Mrs Britten, who has been fostering children for 30 years, told the Gazette. "Sometimes you get exhausted. The Jessie May nurses are all very well trained. When they come it's a breath of fresh air."

The disease means that the 16-year-old can suddenly stops breathing and has had to be resucitated several times.

She is unable to eat and has to be fed through a tube. She also suffers from epileptic fits and is incontinent.

Speaking about her private meeting with Mrs Cameron, she said: "She was really nice, very calm and friendly. She said she understood and I know she lost a little child."

She added: "I'm hoping that other people will set up their own bank of nurses. This is something that ought to be everywhere."

Over the past three decades, the Brittens have looked after 107 children, most of of them with disabilities, including three with terminal illnesses.

Jessie May nurses offer a Hospice at Home Service to over 70 children in South Gloucestershire, Bristol and North Somerset.

They provide nursing care, end of life care, practical and emotional support, telephone support during a child's life and bereavement support for up to five years after a young patient's death.

At the event guests heard from Samantha Cameron, who also shared her experiences.

The charity is aiming to raise £30,000 this year to employ more Jessie May nurses in order to meet the increasing demand locally.

To make a donation visit www.jessiemay.org.uk