By Molly Pennington
THIS NINE-YEAR-OLD BOY has been compared to Sideshow Bob, Bart Simpson, Ivan Drago, and Val Kilmer because of a rare genetic condition that makes his hair impossible to comb flat.
Sam Barley (9), from North East Lincolnshire, UK, was born with Uncombable Hair Syndrome, also known as Spun Glass Hair, which is a rare structural anomaly of the hair.
This condition usually presents in childhood as very blonde, dry, frizzy hair that can’t be combed flat, and then often disappears altogether at the start of puberty.
Uncombable Hair Syndrome is genetic and is caused when both parents are carriers of the recessive gene.
The parents are often unaware that they carry the gene and don’t have the condition themselves.
Sam’s mother, Helen Barley (38) a Skills and Employability Trainer, first noticed that her son had unique hair when he was only six-months old.
However, it wasn’t until 2019 when Helen’s Mother in Law saw two other children with Uncombable Hair Syndrome on BBC One’s The One Show that the family realised Sam might have the condition.
There are only around 100 documented cases of Uncombable Hair Syndrome in the world.
Sam and Helen are ‘proud’ of Sam’s uniqueness and are determined to raise awareness about his condition.
“The most common thing we get is people staring at Sam’s hair,” Helen said.
“When Sam was about four years old, a few children at school started to tease him about his hair so he would wear a hat every day and refused to take it off.
“This is when we made the decision to let him have his hair shaved short to his head.
“The most common comments are, ‘What have you done to his hair!’, ‘Is that his natural colour or have you dyed it?’ and, ‘Have you crimped it or something?’
“I genuinely believe that people are just being curious and not cruel which is absolutely fine.
“He gets asked if people can touch his hair and we’ve had a few asks for photos while abroad too.
“I think we’ve only ever had one slightly negative comment when a grown man once told Sam to his face that he looked like he’d stuck his fingers in a plug socket.
“He’s had a few celebrity comparisons: Dolph Lundgren when he played Ivan Drago in the Rocky films and Val Kilmer (Iceman) from Top Gun, and Bart Simpson and Sideshow bob have also been mentioned.”
Sam has learnt to embrace his uniqueness and finds the comparisons “brilliant”. He has even allowed his hair to grow longer.
“Sam has a great sense of humour,” Helen said.
“I’m proud of Sam for embracing his uniqueness and learning to love his individuality.
“We just wished more people knew that Uncombable Hair Syndrome actually exists and is a genuine condition.
“Sam gets comments about his hair almost every week and I don’t think we’ve ever met anyone who knew what UHS was.
“All of the research we have read has said that there are only 100 diagnosed cases of UHS in the world but I’m certain there are thousands of undiagnosed cases.
“It’s amazing how many people who meet Sam actually say, ‘oh I know someone who used to have hair like that!’
“I’m in a Facebook group of about 900 members, all of which either have UHS or have children with UHS.
“It’s just that those cases haven’t officially been diagnosed.
“Sam is literally a one-in-a-million and I’m so proud that he remains loving, caring and kind no matter what comments and attention he receives.
“He’s just a normal 9-year-old boy who has this unique, beautiful hair.”
Sam himself is also keen to raise awareness of the condition.
“I’m proud to be unique, and I’m proud of who I am,” Sam said.
“It has impacted my life a little bit because every day people ask me, ‘what have you done to your hair?’
“It bothers me a little bit which is why I want to raise awareness of uncombable hair syndrome.
“It’s a thing and it’s not a bad one.”