A mum says her daughter’s rare undiagnosed condition has left her looking after her 10-month-old baby for the last 19 years.
Teenager Daisy Rainey is completely dependent on her mum Annie, 53, dad Nick, 56, and older brother Harvey, 22.
Just like an infant, Daisy sucks a dummy, wears nappies, cannot talk and has to be fed and clothed by her family.
Her parents have even installed a baby monitor in her room that alerts them each time she wakes up, with her doting parents going into her room at least four times a night to put her dummy back in.
Daisy, who is at constant risk of severe epileptic seizures, can do things babies can’t – she can walk and hum in tune – and is incredibly strong and with an apparent high pain threshold.
But doctors have never been able to figure out what is causing Daisy’s symptoms.
For nearly two decades the Rainey family – who live in Cardiff, Wales – have sought answers, but Daisy’s condition has baffled every specialist they’ve seen.
Now mum Annie, who is Daisy’s main carer, has written an incredibly moving and powerful account of the raw reality and heartbreak of raising Daisy, calledDaisy Can’t Talk.
“We’ve never had a diagnosis in nearly 20 years,” she said. “We’ve had genetic tests done but Daisy has never been diagnosed with a condition.
“Nick my husband has always been of the belief does it really matter what she’s got as we’ve still got to deal with it.”
Annie details every aspect Daisy’s life; from humorous moments over the years to the truly gut-wrenching ones.
“I started writing this book because I wanted to get across how bad Daisy is,” Annie said.
“Very early on, when Daisy was about three, I was convinced she was autistic but she’s definitely not.
“It might sound terrible but if only she was autistic, there’s a lot more help out there, she’d fit in a box, she could go to clubs and have a label, it’s easier.”
Over the years the family have seen scores of specialists but have come no closer to answers.
“Doctors just sort of scratch their heads, because Daisy won’t let someone examine her or look in her ears, or take her temperature,” she said.
“Everything throughout her life has been guess work. When we ask has she got an ear infection the doctor doesn’t know, so she just goes on antibiotics anyway.
“Daisy is there trashing the room or the waiting room or pulling things off the desk and they just want rid of us.”
Despite being no help or support because of the lack of diagnosis, Annie said she has never thought of sending her daughter away.
“A specialist once said to us, ‘she’s got Daisy syndrome’, because they’d never met anyone like her.
“Her milestones are at about 10 months mentally but she’s in a 19-year-old body.
“She’s got the strength behind her to be really stubborn and not to move, but the simplest of pre-school toys, she can’t work them.
“Yet she’s able to walk, and I think this is the bit that baffles the doctors, because she shouldn’t be able to walk.”
Annie, who said Daisy has an “incredible tone for music”, said she has come to terms with a sense of loss over what could have been for her daughter.
“I think I’ve done my grieving, I’ve mourned her life, of what we’ve not been able to do. I’ve mourned for her for not being a teenager, and not being a sister to Harvey,” she said.
“I feel such guilt for Harvey because nothing has ever been normal for him growing up, because Daisy came first.
“And I feel such guilt for my husband Nick because he’s never had the daughter he should have had, he’s never going to walk her down an aisle.
“We just have this baby that is huge with the biggest nappies.”
The family have recently made the decision to put Daisy into a residential special needs college where she’ll board and come home outside term time.
“It’s been a monumental and agonising decision. I feel immense guilt and feel I’m failing her but on the flip side I know the college is the most amazing setting for Daisy and we couldn’t be luckier in having her accepted there for the next three years.”
A neurologist who has worked with Daisy since she was four-years-old said her condition may never be fully explained.
“What Daisy has is learning difficulties, certain behaviour traits and seizures, and that’s not really a syndrome, but that’s the level we are working at,” he said.
“We haven’t been able to define it more through the tests we’ve run, to try to get the aetiology, the cause.
“It’s always very humbling to see how amazingly parents of children like Daisy do, if you put yourself into their shoes, well I don’t think I’d cope.”