One-year-old with the rare ‘uncombable hair syndrome’
A mother has revealed that her baby is one of only 100 people in the world diagnosed with ultra ‘rare unkempt hair syndrome’ – but she teaches him how to be proud of his unruly locks.
Katelyn Samples, 33, of Atlanta, Georgia is the mother of Shepard, two, and 14-month-old Locklan.
When Locklan was about five months old and his hair started to grow out, Katelyn and husband Caleb, 33, noticed it was quite frizzy and thought it was going to be curled.
“It came straight up and so soft and fluffy,” Katelyn recalled.
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Locklan’s frizzy hair that his parents thought would eventually lead to curly locks, but instead they discovered he has ‘uncombable hair syndrome’
The genetic condition is very rare and only 100 people in the world have been diagnosed
“As it continued to grow, it never put down…many people who see it call it a chick.”
Then, over the summer, a stranger texted Katelyn to ask if he had something called uncombable hair syndrome.
Katelyn had never heard of the rare condition, which causes a rare structural anomaly of the hair meaning it can’t be brushed or squashed no matter how hard you try.
The condition is extremely rare with only 100 cases worldwide, and some believe Albert Einstein’s famous “mad scientist” look was because he had UHS.
The Samples Family: Locklan, bottom center with his older brother, Shepard behind him, with their parents
Katelyn said, “Because UHS is so rare, our pediatrician referred us to a pediatric dermatologist/specialist in Emory in Atlanta, Georgia.
“They took samples of his hair and called us a few weeks later and confirmed that it was indeed Uncombable Hair Syndrome!
Uncombable Hair Syndrome: The condition made famous by Albert Einstein
Uncombable hair syndrome is a rare hereditary condition that causes locks to stand up from the roots and not be flattened.
Such hair is usually silver blond or straw colored.
The hair usually appears between three and twelve months of age.
In rare cases, the syndrome has occurred in addition to bone and eye abnormalities.
The syndrome usually resolves or improves at the onset of puberty.
It can be more manageable by applying conditioners and using soft brushes.
Source: Genetic and Rare Diseases Information Center
“His doctor had only seen one other case in the past 19 years. We have no idea why he has it.’
Although UHS usually only affects the hair, Katelyn was still concerned about the diagnosis.
She said: ‘It’s not easy to hear that your son has a genetic condition, especially since it’s so rare that there isn’t much information about it. But as I learned as much as I could and connected with other parents around the world (in a UHS FB group), I became less scared and more appreciative of how unique Locklan is.
“Apart from wild and insanely cool hair, he’s perfectly healthy and very happy. He does have severe eczema, possibly related to UHS.’
Right now, because Locklan is still young and his hair is short, his hair routine is quite simple, and his parents have found that its unique texture actually makes it easier to keep clean.
Katelyn said, “His hair doesn’t need to be washed very often… maybe once a week.
“It’s water resistant, so it takes a minute to saturate with water and mild shampoo.”
His signature mane attracts attention when outside, but usually he doesn’t mind.
Katelyn said, “Lock is already a minor celebrity. Everywhere we go people come to us.
“They ask about his hair, and sometimes they even ask to touch it! At an autumn festival in a local town, people even asked if they could have their picture taken with him. He enjoys the attention.
“We really can’t go anywhere without at least one person making a comment about their hair. It’s almost always from a good place!
“But the mean/rude/sarcastic comments also happen and it breaks my heart.”
His mom has revealed that the 14-month-old’s hair has gotten a lot of attention, from kind comments in real life to mean ones online. She’s heard people say his hair looks like he’s stuck his finger in an electrical outlet
Some of the comments Katelyn says she’s heard include people calling it “crazy” or saying he “looks like he stuck his finger in an electrical outlet.”
Other people say things like, “Wow, his hair makes me happy,” “He looks like my cat when he’s scared,” and “That baby wakes up every day having a bad hair day.”
Katelyn added: ‘For now, me and my husband are the only ones dealing with it, but as Lock gets older, so will he.
‘Lock’s hair is truly a source of joy and we celebrate that. I want him to grow up to be proud of his differences and what makes him unique…everyone should do that!’
After getting his diagnosis, Katelyn and Caleb started his Instagram account @uncombable_locks in October to share photos of their son and raise awareness.
Katelyn said: ‘We set up his IG account because people are really so intrigued by his hair and love it so much that we wanted to raise awareness of such a rare genetic disease.
“My husband is very creative and came up with his IG name and set up the account!”
“Between his hair and his smile, we wanted to spark some internet joy.”