Girl with rare syndrome that makes her hair impossible to comb beams after her mane is finally tamed

A little girl with a rare condition leaving her hair impossible to brush has finally tamed her locks for the first time in nine years.

Lyla Grace Barlow, nine, has suffered with Uncombable Hair Syndrome since she was one, leading to tearful mornings as mum, Alex Barlow, 32, tried to tame it with a brush.

The condition, caused by mutated genes, is thought to affect just one in 100 people in the world and creates an uncontrollable fizz that can’t be combed flat.

However, the stay-at-home mum, from Derby, has revealed how Lyla Grace’s bushy mane is naturally becoming easier to manage – which is common in children with the condition as they approach puberty – and the pair are finally able to brush and even plait it, making life easier for both of them.

Lyla Grace Barlow, nine, has suffered with Uncombable Hair Syndrome since she was one, leading to tearful mornings as mum, Alex Barlow, 32, tried to tame it with a brush

As the condition is calming down, the nine-year-old is finally able to have her hair combed and styled as she wishes

As the condition is calming down, the nine-year-old is finally able to have her hair combed and styled as she wishes 

The mum-of-four said: ‘It’s so much easier to brush and she’s a lot happier with it now.

‘We can plait it and tie it up and when it’s tied up you can barely tell she’s got the condition.

‘She loves her hair now.

‘People used to say she looks like Albert Einstein and she used to compare it to her sister’s hair because it would stand on end. But now it’s really long and loads easier to manage.

Ever since her hair started growing, Lyla Grace's mane was a challenge for her mother, and painful to comb

Ever since her hair started growing, Lyla Grace’s mane was a challenge for her mother, and painful to comb

The toddler was officially diagnosed aged five after a visit to the hospital for a glandular fever. Medics said they had never seen hair like it

The toddler was officially diagnosed aged five after a visit to the hospital for a glandular fever. Medics said they had never seen hair like it 

What is Uncombable Hair Syndrome? 

Uncombavble Hair Syndrome occurs because of a mutated gene. 

It causes the person’s hair to grow frizzy and extremely hard to tame with a brush. 

The hair, which grows fully and white or silver, does not grow downward, but instead, grows from the scalp in multiple direction. 

The condition improves as children near puberty, and the hair then starts to grown downward and adopts a normal or near-normal texture. 

It is possible that people who experience uncombable hair as children pass it on to their own heirs  in the future. 

The condition is extremely rare, with about 100 reported to have the syndrome in scientific history, however, it was noted the condition could have gone unreported in some people as they grew older. 

Source: medlineplus.gov 

‘The condition does calm down as children hit puberty so, although it’s still there, it has tamed a lot.’

Alex and decorator husband Mark, 42, tried endless products to try and untangle Lyla Grace’s knotty locks but to no avail and the little girl would often compare her hair to her sister’s, Emilia, 11, Nancy-Rose, six, and Mary-Jean, one.

Lyla Grace was officially diagnosed when she was five after a spell in hospital for Glandular Fever and medics admitted that they’d never seen hair like it.

Alex said: ‘Lyla Grace’s hair started growing and her baby hair was just like fluff.

‘I thought it was amazing but I had a feeling something was wrong.

‘People said it was just baby hair but her sister is 20 months older than her so I knew it wasn’t normal.

‘We had a graph of different types of hair and we couldn’t find hers on there.

 

Mother Alex, 32, explained the condition was known to calm down as children neared puberty and that Lyla Grace's hair had become more manageable now that she was nine

Mother Alex, 32, explained the condition was known to calm down as children neared puberty and that Lyla Grace’s hair had become more manageable now that she was nine

Lyla Grace as a baby, with her impressive mane. Alex said she found her daughter's hair amazing when it started to grow like 'fluff'

Lyla Grace as a baby, with her impressive mane. Alex said she found her daughter’s hair amazing when it started to grow like ‘fluff’ 

As Lyla Grace's hair started to grow, Alex said it felt like candy floss (pictured)

Lyla with her older sister. Alex, who had children before Lyla Grace, knew her hair was not 'normal'

Lyla Grace’s hair felt like candy floss, left, and Alex, who had older daughters (one with Lyla Grace, right), knew it was not business as usual

Now that she's nine, Lyla Grace can have fun with her hair, and even had it plaited by her mother

Now that she’s nine, Lyla Grace can have fun with her hair, and even had it plaited by her mother

‘It was just fluff, like candy floss.

‘It grew quite quick and until she was about four it was very short then it started growing into dreadlocks and it was really hard to manage.

‘We used lots of products to try and get a comb through it but nothing worked.

‘It was painful for her when I tried to brush it and it used to stand on end.

‘Lyla Grace had so many illnesses when she was younger and she was in hospital a lot so the doctors were always trying to work out what was wrong with her hair.

‘We thought it could have been a vitamin deficiency.

Lyla Grace's hair now that it can be combed and tamed

Lyla Grace's blond locks looking smoother with her younger sister now that she's nine

Alex revealed she tried all products she could find to help comb her daughter’s uncontrollable mane, but now, it’s finally letting itself be tamed

Lyla Grace's mane when she was a toddler, next to her Older sister Emilia. The mutation is caused by heart shaped hair follicles. Usually, follicles are oval-shaped or round

Lyla Grace’s mane when she was a toddler, next to her Older sister Emilia. The mutation is caused by heart shaped hair follicles. Usually, follicles are oval-shaped or round

‘Her doctor said he hadn’t seen hair like it in 25 years.

‘It’s caused by heart shaped follicles, a normal person has round or oval shaped follicles.’

Despite the painful mornings and attempts to brush her hair, Lyla Grace grew to love her fluffy frizz which has made her famous at school.

Lila Grace's frizzy hair during a cooking session at home with her mother. Alex said the nine-year-old embraced her frizzy hair

Lila Grace’s frizzy hair during a cooking session at home with her mother. Alex said the nine-year-old embraced her frizzy hair

Lyla Grace as a toddler. Kids at school love her untamed mane, Alex said, adding it made Lyla Grace 'famous'

Lyla Grace as a toddler. Kids at school love her untamed mane, Alex said, adding it made Lyla Grace ‘famous’ 

Lyla Grace (centre, front row) posing with her father Mark, 42, her mother Alex, with Emilia (right), Nany-Rose, left and baby Mary-Jean

Lyla Grace (centre, front row) posing with her father Mark, 42, her mother Alex, with Emilia (right), Nany-Rose, left and baby Mary-Jean 

Lyla Grace's fuzzy scalp when she was a baby. Alex, who already have first daughter Emilia, knew something was amiss

Lyla Grace’s fuzzy scalp when she was a baby. Alex, who already have first daughter Emilia, knew something was amiss 

Alex said: ‘She really embraces her hair and the kids at school love it.

‘All the older kids ask to feel it so she’s been really lucky.

‘We’ve raised her to be proud of her hair and be happy with who she is.

‘As long as she goes out with that attitude, she’ll be fine.

‘She was desperate for Mary-Jean to have the same hair but there’s a one in four chance that if you’ve got the faulty gene that your child will have it.

‘She did compare it to her sister’s hair because they always looked different but she loves her hair now.’

Emilia with Mary-Jean, Nany-Rose and Lyla Grace. Lyla Grace hoped her little sister Mary-Jean would have the same hair as her

Emilia with Mary-Jean, Nany-Rose and Lyla Grace. Lyla Grace hoped her little sister Mary-Jean would have the same hair as her

Lyla Grace embrassing her frizzy hair dressed up as Beetlejuice for Halloween. Lyla Grace used to compare her hair to her sister's, but has learned to love it

Lyla Grace embrassing her frizzy hair dressed up as Beetlejuice for Halloween. Lyla Grace used to compare her hair to her sister’s, but has learned to love it 

The family pictured this year. Alex said she raised Lyla Grace to be proud of her hair and love who she is

The family pictured this year. Alex said she raised Lyla Grace to be proud of her hair and love who she is

Lyla Grace when she was younger. Alex said her daughter would be fine with her looks as long as she had the 'attitude'

Lyla Grace when she was younger. Alex said her daughter would be fine with her looks as long as she had the ‘attitude’ 

The frizzy haired tot as a toddler. Alex said she loved her daughter's hair, but admitted it made combing sessions difficult

The frizzy haired tot as a toddler. Alex said she loved her daughter’s hair, but admitted it made combing sessions difficult 

Lyla Grace with plaited hair. The nine-year-old is confident about herself and her mother revealed older kids were always asking to touch her hair

Lyla Grace with plaited hair. The nine-year-old is confident about herself and her mother revealed older kids were always asking to touch her hair