She’s the angelic five-year-old whose wild mop of hair makes Boris Johnson look positively polished.
But Lyla-Grace Barlow has endured many tearful mornings as mum Alex tries brushing her hair.
She is thought to be only one of 100 people worldwide to suffer from Uncombable Hair Syndrome — a condition caused by a mutated gene which creates abnormal hair strands that tangle and frizz to an extraordinary degree. Albert Einstein was believed to have it, too.
Trichologist Iain Sallis says: ‘This hair type is very rare. It’s known as “spun glass syndrome” as the hair breaks so easily. The only thing you can do is treat it gently.
‘Unlike Caucasian hair strands, which are oval in shape, Lyla’s glitch in her genes means her hair follicles are heart-shaped. That means a cross-section of a strand of her hair would be irregular, which creates frizz.’
‘She hates us combing it and gets really upset because it hurts her,’ says Alex, 28, a full-time mother to Lyla and her sisters, Emilia, seven, and two-year-old Nancy-Rose.
‘So many hairdressers have no idea what to do with it. Even stylists who specialise in Afro hair have said “You have to be joking”.
‘It gets so knotted it turns into dreadlocks and becomes painful to comb. She also gets uncomfortable as the hair traps heat. Normal people sweat and heat escapes through their head, but we’ve had to call 999 when Lyla overheated and started convulsing. Her hair smells like it’s on fire if she gets too hot. It can be very worrying.’
Alex and her husband, Mark, 38, who live in Derby, have tried countless products on Lyla’s hair, to no avail.
‘When we put on creams, serums or oils, it looks sticky and wet,’ says Alex. ‘We’ve tried several shampoos and conditioning treatments and started putting her hair in cornrows (close-to-the-scalp plaits once favoured by David Beckham). Children and teachers at school are fascinated by it.’
Lyla was born without any hair but sprouted downy tufts of bright white hair around the age of one. As Alex and Mark are dark-haired, Alex says she knew something wasn’t right.
However, her initial worries took a more sinister turn when Lyla came down with a series of illnesses including bronchiolitis, pneumonia and glandular fever.
‘I’d begged for genetic testing for years, as I was worried her hair could be a sign of something more serious,’ says Alex. ‘We discovered a condition called Kinky Hair Syndrome [known as Menkes disease], which affects copper levels in the body.
‘Children with this have mad, wiry hair but it causes deformities and they usually die before the age of five. We were terrified that this was what she had.’
Thankfully, when Lyla did have genetic testing last November, the gene which causes Kinky Hair Syndrome was not present.
Her DNA was sent to a German university for further tests, which confirmed her wild mane was due to a gene mutation that causes Uncombable Hair Syndrome. Unbeknown to Alex and Mark, they had passed down this gene to Lyla. ‘We had no idea we had the gene,’ says Alex.
‘There’s a one-in-four chance that if we have another child, they’ll have the same hair. People would say, “It’s just curly hair”, but now we know it’s a genetic condition. Thankfully, the other illnesses had nothing to do with it and were just bad luck.’
So can Lyla’s ‘untameable hair’ ever be tamed? Traditional blow-dries and harsh brushing will only damage her delicate hair.
One man who seems to think it can be is Shaun Pulfrey. After 30 years of working worldwide as a hair colourist with stylists such as Vidal Sassoon, Shaun invented the Tangle Teezer, a detangling hairbrush for untameable hair.
Known to millions of parents for averting hair-brushing meltdowns with their children, its celebrity fans include Victoria Beckham and Emma Watson.
Shaun sells 20 brushes a minute worldwide and his company is worth £200 million.
‘As soon as I saw Lyla’s story in the news I thought I might be able to help her,’ he says. ‘Her hair looks similar to damaged hair that has been over-bleached or straightened with too much heat.’