Shilah Calvert, 12, from Melbourne, Australia, has hair that draws attention—it sticks straight out of her head. It’s not unusual for people to stop and stare, do a double take, or even attempt taking photographs of Shilah.
While her standout blonde hair, the result of a genetic mutation, has led her to often face unwanted attention or hurtful remarks, it exactly suits Shilah’s luminous character and personality.
“We have been told to have her hair is like a 1-in-a-million [chance] and even more so to have total coverage,” said her mother, Celeste Calvert-Yin.
“She is just perfect the way she is and is truly something special. Her personality, passions, and strengths are like no one else in our family, and we truly believe she has been blessed with all these attributes, including her amazing hair, for a reason.”
Blessings as they are, Shilah’s unique attributes have still presented her with some healthy challenges.
When she was born on April 22, 2010, Shilah was a perfectly healthy baby and had hair just like most infants. In fact, it was just like her brother’s. And then—just like most infants—it fell out when she was about 3 months old. Upon growing back, however, her hair had changed significantly.
“It seemed to just stick straight out and was so, so super fluffy. As the hair grew longer, it just didn’t seem to settle down and in fact kept standing straight up,” her mother recalled.
Her parents assumed Shilah’s blaze of blonde would settle down at some point, but as the months went on and her hair showed no sign of being tamed, the family acquiesced to the reality that something was permanently different about it—although they were unsure of the cause.
Then came the parade of spectators, who the whole family would have to grow accustomed to.
As a young child, Shilah’s conspicuous blond hair was a magnet for comments—some kind and some cruel. Her family grew accustomed to hearing all sorts of things; the most frequent remark being if their baby had stuck her finger in an electric socket.
“The comments were the most hurtful at times. I know people sometimes say what they think without any filter, but to hear jokes being made about your child that were at times cruel was rough,” Calvert-Yin said.
That was when Shilah’s parents realized she would need some powerful tools in her toolbelt.
“It was pretty much then and there we decided that Shilah’s biggest tool will need to be her resilience and for us to teach her self-love. And so, the journey began,” her mother said.
Early on in her journey, when she was about 5 years old, Shilah underwent a dental procedure. The pediatric dentist noticed the brittleness of her teeth and that her enamel was weak. Then, in the hospital, the anesthetist who worked with Shilah just happened to know about Uncombable Hair Syndrome (UHS) and had been researching the genetics that contributes to the condition.
Explaining that UHS is caused by a gene mutation, the anesthetist asked permission to further examine Shilah. The results showed that, while her hair and teeth were affected, her bone and nail health were not impacted. Finally, the discomfort of wondering about the unknown was assuaged.
“I was relieved, excited, and so overwhelmed by this information that I immediately phoned my mum and said I have an answer to Shilah’s hair,” Calvert-Yin recalled.
Today, true to her diagnosis with UHS, Shilah’s hair remains a challenge. She struggles with severe breakage, so much so that the underside layers are only about 1–2 centimeters long. Just when she thinks it will grow, it snaps off again. And yet, Shilah is making the best of it.
“All she ever wanted was long hair, but these days she is happy being her, and being pretty creative with some of her hair styles,” her mother said.
And while Shilah’s ability to respond is maturing, her hair still draws varied responses from onlookers.
“Shilah has learnt to respond and to ignore, but it has been an up and down road,” Calvert-Yin explained. “When she was younger, she was really savvy and quick-witted, but as she has gotten a little older, she has become a little more self-conscious again, but that seems to be due to her experiences in school and some of the bullying that exists.”
Her mother describes it as “a little online community” of those who live with, or know someone who lives with, the condition. “It has been amazing how many people have reached out and contacted Shilah sharing their personal stories and photos,” she said.
Calvert-Yin adds that the social media account, which will be managed by Shilah when she is older, has helped empower Shilah to give by helping others with her stories—and “maybe one day will make a real difference in someone’s life.”
“The connections she has with others around the world is truly amazing and for that we are very grateful,” said the mother.
Calvert-Yin says that the most important job for parents with standout children like Shilah is to teach them well.
“Teach them to love themselves, teach them to be resilient, but most importantly, teach them to be kind no matter what,” she said. “No matter what makes you different or stand out in a crowd, love it, embrace it and rock it!!”
