Emma, 23, has Retts Syndrome, a rare genetic disorder that affects brain development. There is no known cure and life expectancy can be into the forties. Around one in 12,000 children are affected and these are almost exclusively girls.
Emma has had spinal surgery, a hip removed, and has osteoporosis. She cannot walk or talk so needs feeding, bathing and dressing.
Her mother Michelle explained:
“Emma was about 14 months old when we first noticed something was not right. She was not 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 are always in baby mode.”
Graeme, Emma’s father, added:
“80 per cent of her time she is smiling and content. The other 5 per cent she can be in horrendous pain.”
When Emma was four the family were referred to Francis House, and for 19 years they have relied on the hospice for care and support. Here Emma stays in an age-appropriate environment with music, gaming and movie rooms, while still receiving clinical care.
“We leave Emma here and she has one stay for five nights and another big stay of nine nights. We know when she comes here she is getting the one-to-one care she needs that she does not get anywhere else.”
“Now Emma is older we can go on holiday and have a week in the sun and it is absolutely fantastic. But if it was not for Francis House being here we would not do that because we would not feel relaxed leaving her.”
“Coming here gives us and Emma a real break. I have never been comfortable with having people coming into the house to care for Emma, when she is at home I care for her myself.”
Michelle describes the demands of looking after a young adult with the needs that Emma has as “intense” and Graeme admits the couple have both had really “dark times.” But they both agree there are more positives than negatives.
“Although I love Emma to bits and she is my world I have missed out on a lot, work-wise and socially. But I do not regret a bit of it, I do not look after her begrudgingly. When you go into her room in the morning, her face lights up and she smiles at you because she loves you.”
Graeme is in his mid-fifties and Michelle in her late forties, and the couple admit their biggest fear is what will happen to their daughter as they get older.
As Michelle said:
“We have always known there would come a point when we cannot look after her anymore. Physically and mentally, for another twenty years it will be difficult.”
However Graeme added that caring for Emma is spurring them on to stay healthy, young and active.
For more information visit Francis House