I’ve been looking after my ‘ten-month-old’ daughter Daisy for the last 19 years
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.
Daisy is just like an infant, she sucks a dummy, wears nappies and has to be fed and clothed by her family.
The 19-year-old can walk and hum in tune - but is at constant risk of severe epileptic seizures.
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 is physically strong and has a high pain tolerance, but just like an infant, Daisy shows no restraint if she doesn’t want to do something.
The Cardiff family have sought answers for nearly two decades, but Daisy’s condition has confounded every specialist they’ve seen.
Annie, who is Daisy’s main carer, has written an incredibly moving and powerful account of the raw reality and heartbreak of raising Daisy, called
Annie details every aspect of Daisy's life; from humorous incidents like a red-faced man running past because Daisy had his steak in her mouth, to the look on a GP’s face as Daisy trashes his office.
But it’s not all light-hearted and Annie also details the struggles of living and caring for Daisy.
She describes how on one occasion, she found daisy chewing on razor blades.
She also details one particularly horrific incident where a botched dental procedure led to Daisy losing most of her teeth aged 15.
Annie said she wanted to write the book to let people know what it is really like raising someone like Daisy for nearly 20 years.
She said: “When out having a coffee or something I’d be listening to people talk about their kids and problems in the playground and I just used to think you really have no idea.
“I started writing this book because I wanted to get across how bad Daisy is. I probably felt a little hard done by with how bad she is, which is awful to say isn’t it.”
Annie, whose husband Nick works as a civil engineer, said as a mum she’d always wanted to know what was wrong with her little girl.
She said: “We’ve never had a diagnosis in nearly 20 years.
“We’ve had genetic tests done but Daisy has never been diagnosed with a condition.
“There was a strong indication once that she had Retts syndrome, but Daisy being Daisy can’t fit a normal syndrome.
“Retts girls tend to be very slight, and very small, but Daisy is the other end of the spectrum and didn’t fully meet the criteria for a diagnosis.”
She said Nick feels as though it doesn’t matter what condition Daisy has as they will still have to deal with it.
She’s so mentally handicapped, her milestones are at about 10 months mentally but she’s in a 19-year-old body
Annie Rainey
She said she wanted to share experiences with others mums, but said that hasn’t been possible because of Daisy’s condition.
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.”
Annie said that Daisy’s neurologist has been there for her daughter more than most.
She said: “I remember once saying to him can’t you open up Daisy’s brain and fix it, even if you just make her talk, or understand, or be like a toddler.
“And he told us if he did that he wouldn’t know where to start. He’s been the most honest person with us through Daisy’s life. He’s still her neurologist but will be transferring her care over to adult services now she is 19, we’re going to really miss him.
“For the rest of the specialists we’ve seen over the years, they go to college and university, but Daisy isn’t in their text books, so they had no answers.
“What I found with all the professionals was that they almost wanted rid of us, they wanted to pass us on to someone else and never gave us any help.”
Annie said that most GPs just “scratch their heads” when it comes to examining Daisy as she won’t let anyone conduct a check up.
“Everything throughout her life has been guess work. When we ask if she has 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.
“They all want us in a room to tick a box and then we’re out so we’re not their problem anymore, and I’ve felt like that about most healthcare professionals for 18 years.”
The family don’t receive any support as there is no diagnosis for Daisy’s condition.
But Annie said she has never thought of sending her away.
She said: “I think a specialist once said to us, she’s got Daisy syndrome, because they’d never met anyone like her.
“She’s so mentally handicapped, 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 said that her daughter also has an “incredible tone for music”.
“If she hears a tune, she can reproduce it with her own noises in tune.
“If she heard Lady Gaga on the radio for example and heard it again, she could reproduce the tune perfectly.
“Which is really frustrating in some ways, because if she can do this, why can’t she do other things.
“I would love to one day have someone say to us they know what Daisy has, but it’s never happened.”
Annie said while it’s been a struggle, she has come to terms with a sense of loss of what could have been for her daughter.
“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.
“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 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.
“I don’t feel that sad for me, but I’d have loved to have taken her girly shopping and have her steal my makeup.”
She said Daisy also has amazing hair, and in that respect, has what every girl would want.
The family have recently moved to an apartment in Cardiff Bay so that everything is on one floor.
Annie said sometimes the one thing about having a child like Daisy was the reaction of other people, or lack of it.
She said: “I am sick to death of apologising, every single day, even if I’m just leaving the apartment, someone will say ‘hello’ and I say; ‘sorry she doesn’t talk’.
“And I think why am I apologising?
Harvey, who has recently graduated in law, lives close to his parents and Daisy in another apartment.
Annie said: “I remember we were in Harvey’s apartment and Daisy was in a manic state after she’d had a bout of seizures. She can be in this state for about a week, it’s almost psychotic.
“She just let out this almighty scream as if she was being attacked and all the doors were open to the balcony and windows, and we fully expected someone to call the police, but there was nothing, no one questioned the screams.
“That’s society now isn’t it, as long as their world is happy, they’ll just ignore the plight of others and walk on by.”
The family are set to send Daisy to a residential special needs college.
Annie said: “It’s been a monumental and agonising decision, one that we had always said wouldn’t happen, but we feel our hands are tied as our options are so limited for Daisy’s future care, so an educational setting, whilst still an option, will give Daisy the specialist setting that we cannot provide.
“Daisy is going to a residential college and I’m beyond worried that they’re not going to be able to manage her.
“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.
“Daisy is unlike anything they might have come across. She’s so 24/7 and so vulnerable.”
She added that she has huge anxiety about how Daisy will adapt.
“A couple of days she’ll be fine because she’s been to respite and a hospice, but after that I don’t know, is she going to grieve? Are they going to say ‘sorry, you’re going to have her back’ because they can’t cope?.
“But from visiting the place, we can’t give to Daisy what they can, they’ve got all the facilities she would need, with intensive interaction and a sensory-based curriculum.
“And they’ve got the expertise and patience, but then again, they’ve probably never met a Daisy before so we will have to see what happens.”
A neurologist who has worked with Daisy since she was four years old said her condition may never be fully explained.
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He said: “He said: “She (Daisy) doesn’t have a specific diagnosis. But we know that this happens, there are published papers out there, showing even when doing intensive investigation they still don’t find a cause.
“In neurology you want to find an answer because you think that might help you understand things, certain processes. But if you do medicine clearly processes are not why you’re in it, you’re in it to try and make a difference.
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“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. 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.”