Mother of wild-haired toddler who’s one of 100 people in the world with ‘uncombable hair syndrome’ says she’ll be sad when her daughter grows out of it and loses her distinctive locksLayla Davis, 17 months, from Suffolk, has rare ‘uncombable hair syndrome’She is one of only 100 people in the world known to have the conditionThose affected are thought to grow out of it by the time they reach adolescenceSpeaking on This Morning, mum Charlotte said she will be sad when 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, from Great Blakenham in Suffolk, appeared on This Morning today to discuss her 18-month-old daughter Layla’s condition, which has earned her nicknames like Boris Johnson and Albert Einstein.
The rare syndrome, which is believed to affect around 100 people globally, is characterised by dry, frizzy hair that cannot be combed flat.
Uncontrollable hair syndrome (UHS) develops in childhood, often between infancy and age three but can appear as late as 12.
Charlotte Davis (pictured) appeared on This Morning today to discuss her daughter Layla (pictured, right) who has the ultra rare uncombable hair syndrome
Toddler Layla was born with a headful of black hair, which fell out when she was around four-months-old, and was replaced with her trademark wild blonde locks
Children who develop it tend to have light-coloured hair – and there are only around 100 cases in the world.
Those with the disorder are thought to grow out of it by the time they reach adolescence.
Speaking about Layla to This Morning presenters Vernon Kaye and Rochelle Humes, Charlotte said doctors Layla’s hair has always been noteworthy: doctors even remarked on how much the baby had during scans.
When Layla was born, like many other babies she had a thick head of black hair, which later fell out when she was around four-months-old.
This Morning 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 blonde locks that characterise the syndrome, with her trademark locks emerging when she was around a year old.
Her hair cannot be combed flat because of the shape of the follicles.
According to Charlotte: ‘My mum was…kept saying “I think she might have uncontrollable hair syndrome”.
What is uncombable hair syndrome?
Uncombable hair syndrome (UHS) is a rare disorder of the hair shaft of the scalp.
It is usually characterized by silvery-blond or straw-colored hair that is disorderly; stands out from the scalp; and cannot be combed flat.
Most cases are isolated, but in some cases it has been described in association with other diseases.
The syndrome has been found to be caused by genetic changes in certain genes that code for proteins that are involved in hair shaft formation.
The condition often spontaneously regresses in late childhood.
Source: National Center for Advancing Translational Sciences
‘I said it sounds made up a bit…it’s such a silly sounding name.
‘It can’t be true. That can’t be a thing.
‘But then people started tagging us on Facebook. We had friends messaging 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 one mother went to wake up her daughter one morning, and overnight her child’s hair had changed, and no longer had the appearance of UHS.
Rochelle asked Charlotte how she will feel when Layla grows out of the condition.
Charlotte said: ‘I think I will be a little bit sad because I think she rocks the look.’
Both the presenters noted that the little girl’s wild locks really suit her.
Vernon said Layla’s hair, alongside her piercing blue eyes, give the toddler ‘so much character’.
Charlotte spoke about how the toddler gets a lot of attention when she out, with strangers often approaching her to ruffle her wild locks.
Opening up previously about the condition, Charlotte has said she is proud of the youngster’s super rare diagnosis.
She said: ‘I am really proud to get the diagnosis because it’s so rare…I don’t think she realises how awesome it is.
‘I just want her to grow up and know it is awesome even though she looks different to other people.’
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