Posted by Admin - Mon 25th September 2017 8.41AM
The lives of the parents of Emma Jones are dictated by their youngest daughter.
Every morning the alarm sounds at 5.45 a.m. and another 'ground hog day' as mum Michelle describes it begins.
After the feeding, bathing and dressing routines are complete, Michelle drops Emma off at the day centre near 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 life-limiting condition called Retts Syndrome a rare genetic disorder which affects brain development. Around one in 12,000 children are affected and almost exclusively girls.
"I had a normal delivery and when Emma was born everything was fantastic, we had a gorgeous little girl," said Michelle. "Emma was about 14 months old when we first noticed something wasn't right. She wasn't making any attempt to crawl or to walk. She stopped finger feeding and rolling over, her hands started to clench and all purposeful hand movement stopped.
"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. "80% of her time she's smiling and content," explained Graeme. "The other 5% she can be horrendously in pain."
When Emma was four years old the family were referred to Francis House Children's Hospice, and for 19 years they have relied on the hospice for respite care and support.
As more children with life-limiting conditions are surviving into adulthood, the hospice now cares for more than 110 young people who are over 16 years of age in Francis Lodge, a spacious seven bedroomed wing for teenagers and young adults.
There they can enjoy 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.
Graeme and Michelle Jones are pictured with daughter Emma at Francis House. Picture courtesy of Francis House