A 10-year-old who was born with a rare genetic condition that makes her hair impossible to brush has embraced her fuzzy locks.
Shilah Madison Calvert-Yin, from Melbourne, Australia, has had fluffy hair since she was born but was teased by bullies who said she looked as though she had ‘stuck her finger in a power socket’.
The condition Shilah has is known as uncombable hair syndrome, which means her hair shafts are heart-shaped and missing protein, which straightens it.
When she was younger, Shilah cut off her own hair out of frustration but has now decided to embrace it instead.
Shilah Madison Calvert-Yin, 10, (pictured) from Melbourne Australia, has learned to accept her fuzzy hair after being born with uncombable hair syndrome
From a young age she was teased by bullies who said she looked as though she had put her finger in an electrical socket
Along with her mother Celeste, 39, Shilah hopes that by sharing her story that other people will realise there is nothing wrong with being different.
The Instagram account that Shilah and her mother set up now has more than 15,000 followers and the 10-year-old 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 hate it – especially when there’s wind! Let’s just say, I can’t see!’
Celeste, who works as a teacher, said that many people now reach out to her and Shilah on social media explaining they had no idea that uncombable hair syndrome existed and thanked them for raising awareness of it.
The mother knew her daughter was different when she was just three-months-old.
In 2014 Shilah took part in a Jurassic Park-themed excavation activity for kids at their local shopping mall, and donned a lab coat (pictured) which led to her being compared to Doc Brown from Back To The Future
Shilah’s mother Celeste has set up an Instagram page for her daughter which is now followed by more than 15,000 people
Celeste 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!
What is uncombable hair syndrome?
Uncombable hair syndrome is a condition that is characterized by dry, frizzy hair that cannot be combed flat.
This condition develops in childhood, often between infancy and age 3, but can appear as late as age 12.
Affected children have light-colored hair, described as blond or silvery with a glistening sheen.
The hair does not grow downward but out from the scalp in multiple directions.
Despite its appearance, the hair is not fragile or brittle, and it grows at a normal or slightly slower rate.
Only scalp hair is affected in uncombable hair syndrome.
For unknown reasons, this condition usually improves over time.
By adolescence individuals with uncombable hair syndrome have hair that lies flat and has normal or nearly normal texture.
‘It didn’t seem to calm or settle, but I didn’t really think anything of it until people started to make comments.’
Shilah’s unique hair often draws attention, with some people taking pictures of her without asking.
‘Early on it was quite nasty because kids wanted to run up and touch her and pull her hair,’ Celeste 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 started to get older her hair became dry and more fragile, resulting in it becoming matted overnight.
Having to untangle her hair each morning would reduce Shilah to tears and ended up leaving her hair short at the back, with the rest of her hair not growing beyond 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 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 wrongly suggested she go to a salon which specialise in Afro hair.
Celeste said: ‘Her hair is not like African hair; it is still very soft and doesn’t need oil or a deep condition, and any heat treatment will break it.
When she was aged just four, Shilah became fed up of not being able to put her hair into a ponytail and decided to cut some of it off herself. This resulted in her having to wear a headscarf whenever she went out
It wasn’t until Shilah was seven that she was diagnosed with uncombable hair syndrome after a trip to the dentist
‘But 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.
Shilah’s condition means that her hair grows heart-shaped because it lacks the proteins needed to straighten it
‘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 means Shilah’s hair grows ‘heart-shaped’ and is missing a protein which leads to it growing straight out and looking more frizzy.
It develops in childhood and affected children have light-colored hair with a silvery sheen, and cause 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.’