Girl embraces fluffy hair caused by rare condition that makes her ‘look like Einstein’
A ten-year-old with a rare genetic condition which means her locks are impossible to brush has embraced her fuzzy “baby hair”.
Shilah Madison Calvert-Yin, from Melbourne, Australia, has had a halo of fluffy hair since she was a baby.
She was born with uncombable hair syndrome – a condition where her hair shafts are heart-shaped and missing a protein that makes it sit straight.
Growing up, Shilah, who was often teased by bullies who said it looks like “she’s stuck her finger in a power socket” and others who said she looked like Albert Einstein, once cut off her own hair out of frustration – but now she embraces her unique do.
Mum Celeste, 39, set up an Instagram on Shilah’s behalf in 2017, which has more than 15,000 followers, to “show other children there’s nothing wrong with being different”.
Shilah said: “I get teased a lot and called ‘fluffhead’ at school – it’s not nice.
“I personally like it now but at the same time I hated it – especially when there’s wind. Let’s just say I can’t see!”
Teacher Celeste added: “A lot of people reach out to us through social media now who had no idea what it was and they thank us for giving them answers.
“Comments have been both supportive and ugly, but we are happy to be spreading awareness and being part of a community that reaches all over the world.”
Celeste knew her daughter was different when she was just three months old.
She said: “Her brown baby hair had fallen out as it should but this weird fuzz started to come through and grow straight up.
“It was like nothing you’d ever seen before. It didn’t seem to calm or settle, but I didn’t really think anything of it until people started to make comments.”
Celeste said people will often try to touch or take pictures of Shilah without asking.
She said thoughtless people will frequently say “it looks like she stuck her finger in a power socket”.
“Early on it was quite nasty because kids wanted to run up and touch her and pull her hair,” the mum said.
In 2014 Shilah took part in a Jurassic Park-themed excavation activity for kids at their local shopping mall, and donned a lab coat.
“A stranger likened her to Doc Brown from Back To The Future which even though it’s my favourite film, I never considered, but she did look exactly like Doc or Einstein,” she said. “It has now become a sort of in-house joke.”
As Shilah got older her hair became dry and fragile, and would get matted overnight.
Detangling would reduce Shilah to tears and leaves it very short at the back, and the rest of her hair doesn’t grow past her shoulders.
Aged four, Shilah became fed up with her hair not all pulling back into a ponytail and cut off the shorter parts that didn’t reach.
It took over two years for Shilah’s hair to grow back, and she wore a headscarf to hide it.
Celeste said: “I was more distraught than she was, she decided that she was sick of her hair sticking straight up but when she cut it short it the opposite happened and it became more spiky.
“That’s the only haircut she’s ever had.”
Hairdressers don’t know what to do with her delicate locks, and some have suggested she go to a salon which specialises in Afro hair, with her mum saying: “These hairdressers still gave her the best experience as they were able to help manage it by styling it into cornrows and keeping it out of her face.”
Shilah wasn’t diagnosed with uncombable hair syndrome until she was seven-year-old, and it was spotted by a dentist.
Celeste said: “Her dentist was concerned about how weak her teeth were and the anaesthetist who was scheduled with Shilah was the one who noticed her hair and told us about uncombable hair syndrome.”
The doctor had done a study on genetics and abnormalities and knew all about UHS, but had never met a child with her condition.
“I was shocked, teary and excited at the same time – finally there was an answer to all those years of questions,” said Celeste.
“What were the chances, out of all the doctors in Melbourne, that we would meet this one?
“She told us she had never heard about anyone in Australia with it and never expected to meet a child like Shilah – she’s one-in-a-million.”
The condition develops in childhood and children affected have light-coloured hair with a silvery sheen, while it also causes weakened enamel, porous bones and brittle fingernails.
Celeste said: “You panic when you hear doctors talk about cell mutations but fortunately Shilah has only broken one bone in her life and now we are careful about her bones and teeth.”