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Mother says she’s proud of toddler’s uncombable hair syndrome

Mother of toddler with wild hair, one of 100 people in the world with ‘uncombable hair syndrome’, says she will be sad when her daughter grows out and loses her signature locks

  • Layla Davis, 17 months, from Suffolk, has the rare ‘uncombable hair syndrome’
  • She is one of only 100 people in the world known to have the condition
  • Those affected are thought to outgrow it by the time they reach adolescence
  • During This Morning, mom Charlotte said she’ll be sad if it happens

The mother of a toddler with a rare condition called “uncombable hair syndrome” says she will be sad when her daughter grows out of the condition.

Charlotte Davis, 28, of Great Blakenham in Suffolk, appeared on This Morning today to discuss the condition of her 18-month-old daughter Layla, who has earned her nicknames like Boris Johnson and Albert Einstein.

The rare syndrome, believed to affect about 100 people worldwide, is characterized by dry, frizzy hair that cannot be combed flat.

Uncontrollable hair syndrome (UHS) develops in childhood, often between childhood and three years of age, but may not occur until age 12.

Charlotte Davis (pictured) appeared on This Morning today to discuss her daughter Layla (pictured, right) who has the ultra-rare unkempt hair syndrome

Charlotte Davis (pictured) appeared on This Morning today to discuss her daughter Layla (pictured, right) who has the ultra-rare unkempt hair syndrome

Toddler Layla was born with a head full of black hair, which fell out when she was about four months old, and was replaced by her signature wild blond locks

Toddler Layla was born with a head full of black hair, which fell out when she was about four months old, and was replaced by her signature wild blond locks

Children who develop it usually have light-colored hair — and there are only about 100 cases in the world.

People with the disorder are thought to outgrow it by the time they reach adolescence.

Speaking about Layla to This Morning hosts Vernon Kaye and Rochelle Humes, Charlotte said doctors Layla’s hair has always been remarkable: Doctors even noted how much the baby had during scans.

When Layla was born, like many babies, she had a thick head of black hair, which later fell out when she was about four months old.

This morning's presenters Vernon Kaye (far left) and Rochelle Humes (left) said Layla's unique hair really suits her

This morning’s presenters Vernon Kaye (far left) and Rochelle Humes (left) said Layla’s unique hair really suits her

When Layla’s hair grew back, she had the wild blond locks typical of the syndrome, and her signature locks started showing up when she was about a year old.

Her hair cannot be combed flat due to the shape of the follicles.

According to Charlotte, “My mom kept saying, “I think she might have uncontrollable hair syndrome.”

What is Uncombable Hair Syndrome?

Uncombable hair syndrome (UHS) is a rare condition of the hair shaft of the scalp.

It is usually characterized by silver blond or straw colored hair that is disorderly; stands out from the scalp; and cannot be combed flat.

Most cases have been isolated, but in some cases it has been described in connection with other diseases.

The syndrome appears to be caused by genetic changes in certain genes that code for proteins involved in the formation of the hair shaft.

The condition often regresses spontaneously in late childhood.

Source: National Center for Advancing Translational Sciences

“I said it sounds a little made up… it’s such a crazy sounding name.

‘It can’t be true. That can’t be anything.

“But then people started tagging us on Facebook. We had friends message us. So I looked it up.’

After receiving the diagnosis, the family was invited to join a Facebook group with members from around the world.

In the group people share their experiences.

Charlotte revealed that a mother went to wake her daughter up one morning and her child’s hair had changed overnight and no longer had the look of UHS.

Rochelle asked Charlotte how she will feel as Layla grows out of the condition.

Charlotte said, “I think I’m going to be a little sad because I think she rocks the look.”

Both presenters noted that the little girl’s wild locks really suit her.

Vernon said Layla’s hair, in addition to her piercing blue eyes, gives the toddler “so much character.”

Charlotte talked about how the toddler gets a lot of attention when she’s outside, with strangers often approaching her to mess up her wild locks.

Charlotte, who has been candid about the condition before, has said she is proud of the youngster’s super-rare diagnosis.

She said: ‘I’m really proud to be diagnosed because it’s so rare…I don’t think she realizes how amazing it is.

“I just want her to grow up and know it’s great, even if she looks different from other people.”

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