A two-year-old girl who was born with a broken arm, caused by an ultra-rare condition affecting fewer than one in a million people, has now fractured more than 50 bones and needs major surgery if she is ever to have a chance of walking.
Breaking her fingers, legs and arms over a dozen times before being diagnosed with Oseteogenesis Imperfecta (OI) – also known as brittle bone disease – at three months old, Winnie D’Arcy’s condition has no cure.
But, according to her musician dad, Steve, 33, the devastating chromosomal disorder, which is not inherited, was not detected by any of his personal assistant wife Emma’s routine pregnancy scans.
Steve, of Chelmsford, Essex, said: “It’s hard to look back at early baby pictures.
“You want to look back with fond memories, but we just feel guilty, because we may have done normal things like picking her up under the arms, which could have caused some of her fractures.”
Winnie’s form of brittle bone disease is very rare, but doctors have told Steve and Emma, 32, that her symptoms should improve by the time she reaches puberty – although, at the moment, almost anything can cause one of her bones to break.
“With some children it can be so bad that just a sneeze can cause a break,” said Steve, a former music industry booking agent, who worked with acts like Tom Grennan and The Libertines before they became famous, but has now left work to be his daughter’s full-time carer.
But Winnie’s parents – who will shortly be moving into the first flat they have bought together, near Witham, Essex, which is all on one level to make caring for their daughter easier as she gets older, are not letting her condition hold any of them back.
Steve said: “OI can be inherited but in Winnie’s case it wasn’t, so the doctors have told us it’s very unlikely we would have any more children with the condition.”
Winnie’s condition is further complicated by a blood disorder called Von Willebrand disease (VWD). The genetic disorder, caused by a missing or defective clotting protein, means her blood does not clot properly and that if she gets injured, she bleeds very heavily.
Her medical challenges also mean she has missed some of the normal developmental milestones for a child her age. She cannot walk or sit up by herself, or feed herself and her speech is delayed.
She has to sleep in her parents’ room in a cot padded by foam, to prevent her breaking her bones on any hard surfaces in her sleep.
And when she goes to bed, her parents take turns to sit and monitor her in one-hourly shifts.
Despite all this, her dad insists she is a very happy and intelligent child, who loves books and can already count to 10 in five languages.
Winnie also adores animals and after Steve and Emma saw how well she responded to the therapy dog that visited Great Ormond Street Hospital (GOSH) while she was there, this summer, they bought her a cockerpoo puppy called Babs, which they will train as a therapy dog, too.
“We will be able to train the dog to tell us if Winnie is in pain or has broken anything,” said Steve, who has also taken an evening class in a simplified form of sign language called Makaton, so that he and his daughter can speak to each other.
“It’s less formal than British Sign Language. You speak as you sign, and it’s been great for helping to build Winnie’s confidence to speak out loud.”
In October, she will have the first in a series of major operations at GOSH, planned to help strengthen her bones, with the hope that, one day, the surgery could even help her to walk.
“Winnie’s legs have broken so many times they are quite bowed. The initial surgery will be to break them, so that a rod can be inserted to help the bones grow straight,” explained Steve.
“We don’t know if she will ever walk, but the rods will help strengthen her legs. They don’t normally do this surgery until a child is three, but Winnie has had so many breaks they are doing it a year early,”
For Winnie, surgery is complicated by her VWD as, if her blood does not clot properly, the doctors will only operate on the lower part of both legs, to prevent her losing too much blood.
If everything goes to plan, however, surgeons will operate on the whole of her left leg, although she will need to return to hospital for surgery on her right leg.
Because of the operations, Winnie will be in a cast from the upper waist down for three weeks, meaning the family will need special equipment to move her safely around their home.
As a result, Steve has started a GoFundMe page, appealing to kind strangers to help him raise funds to cover the additional expenses, plus the cost of a hotel room for him and Emma, so they can be near her during her five-day expected stay in hospital.
“Even the most basic London hotel can cost £150 to £200 a night, so we set up the fundraising page to help out with these expenses,” said Steve
“I am also taking part in the 10k Queen Elizabeth Olympic Park Run in London in January 2020, to raise funds which we will need ongoingly.”
So far, people have been so generous that the couple have already reached their £1,000 target.
“This takes a lot of the stress away,” said Steve. “It means we can now concentrate on Winnie and trying to get her well.
“We both feel eternally grateful for people’s generosity.”
To contribute to the D’Arcy family’s GoFundMe page, go to www.gofundme.com/f/winnie-darcy-fundraiser