A ten-year-old boy has embraced his 'weird and wiry' hair which is caused by a rare genetic condition believed to have also afflicted Albert Einstein. It means his locks are impossible to brush flat and Sam Barley said he gets stopped in the street by strangers asking about his bright blonde, frizzy hair.
He often gets asked if he's 'stuck his finger in a plug socket.' It is thought that the schoolboy has Uncontrollable Hair Syndrome (UHS) - an extremely rare disorder that means your hair is dry, frizzy and can't be combed flat.
Only around 100 people around the world have been officially diagnosed with the genetic condition and it is believed Albert Einstein had the disorder. But Sam has said that he is 'really proud' of his blonde barnet and doesn't mind people stopping him as long as the comments are nice.
He said: "People ask me what I've done to my hair and if I've dyed it or bleached it. They also say it looks like I've stuck my finger in a plug socket. I'm really proud of my hair and my school friends think my hair is brilliant. People stop me quite often but I don't mind it.
"It's alright as long as the comments are nice, not horrible." Sam's mum Helen Barley, 38, first noticed that something was different when he was around two and a half years old and started to grow a head of 'weird and wiry' hair.
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She said: "He was completely bald for the first two years of his life and there wasn't a hair on his head when he was born. Then he got this random, weird and wiry hair and we just thought that it was just his baby hair and it would change as he got older.
"But as he got older, it got whiter and crazier looking and we were all like 'what is this?' Even when he first had his hair cut at three years old, the hairdresser was baffled and had never seen anything like it before.
"We just thought he was unique and special and there wasn't much else to it. When he was five, my mother-in-law messaged me and said she had seen two young girls on TV with UHS and she said she thought he had it.
"The more we looked into it and did our research, we realised that's what he's got." Helen has said that sometimes people stop Sam and make 'genuinely quite kind' comments about his hair but others often 'stop what they are doing' and 'gawk at him.'
She said: "We've had some people stop us and they are genuinely quite kind with it. People will say that they love his hair or they wish they had hair like that and they are kind with it and then we explain what UHS is to them.
"But people sometimes just stop what they are doing and literally just gawk at him. I end up looking at them up and down and wanting to ask if they are alright or if there's anything they need.
"The blink, walk away and don't say anything which is worst to me." The mum-of-two added: "Don't just stare, we would much prefer for people to say that his hair is really unique and ask if it's natural."
After shaving his hair off for a couple of years, Sam has now started to embrace his locks and grow it out. But they've struggled finding a hairdresser who can actually style Sam's hair, as ones they have been to in the past 'don't seem to know what to do with it.'
Helen, of Cleethorpes, Lincs, said: "We've probably been through three or four different hairdressers because they just don't seem to know what to do with it. You can style and brush it one way, then it pings in a completely different direction.
"Luckily, we've now found one hairdresser locally that looks after him and he goes every eight to 12 weeks. UHS is actually meant to be more slow growing than normal hair so his hair doesn't grow as fast.
"So every eight to 12 weeks he goes and gets it cut short around the sides and keeps it long on time. He would look like a big dandelion if we didn't get it cut."
Helen now hopes that Sam will be able to meet another young person in the future who has the condition as he's 'never, ever met anyone else' who has it. She said: "I know he's not the only child in the UK with this - he can't be.
"I know there's got to be other mums out there who have got this kid with crazy hair going 'I don't know what this is.' I would love for him to meet somebody whose got it as he's never, ever met anyone else whose got it.
"I think because of the attention that it brings, it would be really good for him to sit with somebody who goes through the same and also gets stared at because of their hair. He could actually have a conversation with someone who he can sympathise and empathise with because they are going through the same thing."
