THE Ramsbottom parents of a woman with a rare genetic disorder have praised a children’s hospice for its continued support.

Michelle and Graeme Jones’ lives are dictated by caring for their youngest daughter, Emma, aged 23.

Emma has a life-limiting condition called Retts Syndrome which affects brain development.

Around one in 12,000 children are affected, almost exclusively girls.

When Emma was aged four the family were referred to Francis House Children’s Hospice, and for nineteen years they have relied on the organisation, in Manchester, for respite care and support.

There she enjoys respite stays with their friends in age-appropriate surroundings that include music, gaming and movie rooms, a communal dining room and large lounge, while still receiving a high level of clinical care.

“We leave Emma here and she has one stay for five nights and another big stay of nine nights,” said Michelle.

“We know when she comes here she’s getting the one-to-one care she needs that she doesn’t get anywhere else.

“Now Emma is older we can go on holiday and have a week in the sun and it’s absolutely fantastic. But if it wasn’t for Francis House being here we wouldn’t do that because we wouldn’t feel relaxed leaving her.”

“Coming here gives us and Emma a real break. I’ve never been comfortable with having people coming into the house to care for Emma, when she’s at home I care for her myself.”

With Graeme in his mid-fifties and Michelle her late forties, the couple admit their biggest fear is what will happen to their daughter as they get older.

“We’ve always known there would come a point when we can’t look after her anymore. Physically and mentally, for another twenty years it will be difficult,” admitted Michelle. “It does spur you on to stay healthy stay young and active,” added Graeme.