Rare condition means daughter needs round the clock care

THE lives of the parents of Emma Jones revolve around their youngest daughter.

Every morning the alarm sounds at 5.45am and another ‘ground hog day’, as mum Michelle describes it, begins.

After feeding and bathing routines are completed, Michelle drops Emma off at the day centre close to their home in Ramsbottom, and dad Graeme, a self-employed builder, goes to work.

But life is far from normal for these parents – their daughter is 23 years old.

Emma has a condition called Retts syndrome, a rare genetic disorder which affects brain development.

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

“Emma was born and everything was fantastic, we had a gorgeous little girl,” said Michelle.

“She was about 14 months old when we noticed something wasn’t right.

“She wasn’t making any attempt to crawl or to walk. She stopped rolling over and her hands started to clench.

“The skills she had developed were then lost, which is part of a regression period, and she was left as she is today.

“Her body is the size of a 23 year old, but she still has the mind of a baby so we’re always in baby mode.”

The condition has no known cure and life expectancy can be into the forties.

Emma cannot walk or talk and has had spinal surgery, a hip removed, and has osteoporosis.

“Eighty per cent of her time she’s smiling and ●● Graeme and Michelle Jones with daughter Emma at Francis House content,” said Graeme.

“The other time she can be in horrendous pain.”

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

As more children with life-limiting conditions are surviving into adulthood, the hospice cares for more than 110 young people who are over 16 years of age in Francis Lodge in Manchester, a spacious seven bedroomed wing for young adults. A high level of clin- ical care is provided in age-appropriate surroundings that include music, gaming and movie rooms.

“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 have a week in the sun and it’s absolutely fantastic. 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.”