Little Ruby Merlyn suffers from a medical condition so rare even doctors are not 100 per cent sure what it is
A mum has revealed how her toddler has been branded “ugly” by bullies after being born with a misshapen skull.
Ruby Merlyn, from Staffordshire, suffers from a medical condition so rare even doctors are not 100 per cent sure what it is.
She was born with holes in her skull, mismatched eye sockets, cysts on her left arm and left leg bones, and other medical problems.
Twenty months on, she is set to have her face and skull rebuilt ‘like a jigsaw’ in an operation at Birmingham Children’s Hospital.
Despite her condition and previous surgery, the little girl – nicknamed “Ruby Diva” by medics – is progressing normally.
But her mum, Toni Chatterton, says she has been bullied by other children.
The youngster is set to have her face and skull rebuilt ‘like a jigsaw’ at Birmingham Children’s Hospital (
“She’s started to toddle, is funny and naughty,” said Toni, 25.
“She is registered blind, but apart from that is fine.
“Sadly, she has suffered some bullying. Other children have called her ugly.
“Well they are the ugly ones.
“I’m a big woman and I won’t stand for their behaviour.”
Little Ruby was born at 40 weeks after a normal pregnancy on May 3, 2015, following 22 hours of labour.
Her mum had an emergency caesarean section, because the long labour had left the unusually large baby in distress, with a swollen body.
As medics at Walsall Manor Hospital went to place the 11lb 3oz newborn in Toni’s arms, they noticed something amiss.
Ruby was born at 40 weeks after a normal pregnancy on May 3, 2015 (
Ruby, who is adored by her sales assistant mum and junior web developer dad, Liam Merlyn, 26, seemingly had one eye and a misshapen skull.
Her eye sockets were also at different points on her head, with the left significantly higher than the other.
Further tests revealed a whole host of extraordinary medical problems, leaving baffled doctors scratching their heads.
A blood vessel had burst over Ruby’s left eye, making it look like she only had one eye – although this was not actually the case.
She also had cysts snaking up her left arm and left leg bones – making them prone to breaking – and smaller than usual limbs.
She suffers from lipomas, fatty lumps of skin, around her spinal cord.
As well as this, the tot had holes in her skull and a fissure running through it.
“It looked like she’d been shot with a shotgun,” Toni admitted.
Despite this, just a few days later, Ruby was allowed home to Aldridge.
She was given antibacterial eye drops and a referral to the Birmingham hospital, where she would receive more specialist treatment.
“It didn’t matter to me what she looked like,” Toni said. “As soon as I held her I fell in love. She’s beautiful.
“I grieved briefly for the baby she could have been, but that passed quickly.
“I knew I was lucky to have her.”
At less than a year old in March, 2016, Ruby went back to hospital for surgery.
There, she had a dermoid cyst, an overgrowth of non-cancerous tissues, removed from her eye and a false eye fitted.
“But she kept taking it out and chewing it,” Toni laughed.
“So I decided to give that a miss. It was a health hazard!”
Doctors have also rebuilt the location of the youngster’s left eye so it is higher and better matches her right
Doctors have also rebuilt the location of the youngster’s left eye so it is higher and better matches her right.
“That was aesthetic,” her mum explained. “Surgeons are gradually rebuilding her.”
In March this year, Ruby is set to have more surgery at Birmingham.
Over the course of more than four hours, doctors will take out part of her skull and put it back together.
“It will be like a jigsaw,” her mum said. “They will take orbital bone out and two pieces of bone above it, and fix them together.”
And recently, medics may have found out what Ruby is suffering from.
She is thought to have encephalocraniocutaneous lipomatosis, or Fishman syndrome, an ultra-rare condition – with only 60 cases believed to have been reported since 1970.
“Doctors love speaking to me about her,” Toni said.
“She is a fascinating case study.
“But I always knew she was amazing.”