Five-year-old girl has constant bedhead due to rare condition
Zoey Freda, five, has uncombable hair syndrome (UHS) – an extremely rare genetic condition that leaves her with frizzy hair that just can’t be tamed.
Her locks grow out of her scalp in multiple direction, and each strand is fragile, slow growing, and very difficult to style.
She’s faced cruel comments about her appearance, so her mum, Tiffany Lequieu, 35, has set up a Facebook page, called The Chronicles Of Zoey, to raise awareness of the condition.
Tiffany said: ‘I’ve had people say to me, “Look at that bedhead, don’t you take care of your daughter?”
‘It got me thinking how, as adults, we tend to judge a book by its cover a lot.
‘So, the more awareness we can bring to the fact that there is nothing wrong with Zoey, the better. She is smart, quirky and perfectly healthy and she embraces that. She just looks different.’
Oddly, Zoey was born without ‘a lick of hair on her head’, according to Tiffany, who said ‘peach fuzz’ then grew, but fell out when she turned one.
‘When it grew back it looked crimped, like one of those dogs with really crazy fur,’ Tiffany said.
‘It looked like I had taken a crimper from the 80s and crimped every single hair on her head.
‘I was perplexed, because no-one in my family had hair like hers – ours is all brown or black.’
Taking ages to grow, Zoey’s hair could not be styled – making it impossible to tie in girly bows without handfuls snapping off.
While she realised it was unusual, it was not until her daughter was two and she read about another child with UHS, that Tiffany realised this was what she had.
Through a support group for the condition on Facebook, she spoke to other parents and discovered there could be additional symptoms linked to the syndrome that can affect nails, teeth, and most seriously, the heart.
‘Although it’s thought to be extremely rare, the heart condition freaked me out so much that I took her to see a dermatologist when she was two-and-a-half, who confirmed she had UHS, and then a geneticist for tests to rule out any of the other co-morbidities,’ said Tiffany.
‘That whole period was such a whirlwind.
‘Thankfully, they said she had no symptoms.’
Attempting to style Zoey’s hair is tough, and can have nasty consequences.
Once, a round brush became tangled in the little girl’s unruly mop and ended up pulling out a lot of hair and breaking other strands.
‘The crown of her head still hasn’t recovered fully – it’s much shorter back there,’ said Tiffany.
‘This was before we learned that silk pillowcases are the best thing to stop her hair getting matted like that.’
Aged three, the playful toddler had another tanged incident – this time with a pot of toy slime.
Zoey stuck some of the gunk in her hair, which could have ended up yanking out more of the fragile locks, but thankfully her mum managed to clean it out using washing up liquid.
Slime is now banned from the house.
Unless it gets really dirty from playing outside, Tiffany will only wash Zoey’s hair every two to three weeks.
Because she hardly sweats – something Tiffany claims is common among UHS children – her hair stays soft and smooth.
After trying every mask or treatment under the sun – including those designed for afro hair – the only things Zoey’s locks can handle are the odd small spray of detangler and a specially-designed brush.
‘There are multiple times a week when she will be walking around with a clump of hair in her hand,’ said Tiffany.
‘When it first started happening, I thought my child would be bald for the rest of her life, but her hair is extremely thick.
‘However much falls out of that child’s head, there’s a lot more where it came from.’
Sadly, as she gets older, Zoey longs to try out different hairstyles, but she can only wear hats, fabric hair ties and headbands, with elaborate plaits and braids being a no-go.
After trying to tame her daughter’s hair – even once attempting and failing to straighten it – Tiffany now embraces Zoe’s naturally voluminous looks.
The one exception was when Zoey started ballet and tap classes in August 2019, when she had to attempt a bun – a very risky style.
‘It just wouldn’t go the way I wanted it to, but eventually I did it,’ Tiffany recalled. ‘We were a little happy when she said she didn’t like those classes anymore and wanted to do hip hop instead, because that doesn’t require her hair being pulled back.’
It was also a blessing when she failed to show the same aptitude for soccer and softball that Tiffany had enjoyed at school.
She said: ‘Zoey tried out for soccer for three to four-year-olds and we did our best to tie her hair up in a ponytail.
‘But as she was running it kept falling out and she couldn’t see where she was going, so she kept tripping over the ball and bumping into the other kids.’
One unexpected benefit of Zoey’s condition is that her hair doesn’t split, so she rarely needs a trim.
In fact, she has only had her hair cut three times in her life.
Tiffany claimed that her daughter’s hair will continue to get more manageable as she gets older, and may even become ‘normal’ when she reaches puberty, according to scientific research into the condition.
But in the meantime, Tiffany is making sure Zoey loves the hair she has.
She said: ‘We’re very positive about her hair in our house, and we’ve drilled it into Zoey from a young age to be the same.
‘We talk about how it’s crazy and that’s okay, and that the good Lord just spent a bit more time on it to make it that way.’
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