Oklahoma Boy Has Uncombable Hair Syndrome

Thursday, May 26th 2022, 1:22 pm
By: News On 6

Every parent feels their child is one in a million, but for one boy in Edmond it’s backed up by statistics. A rare genetic mutation gives him a unique style.

There’s one thing you’ll rarely see 19-month-old Greyson without, and it’s not a toy, book or bottle. It’s a smile from ear to ear.

“He’s always happy and smiling,” says mom, Jordan Montazzoli. “He was smiling since a day old.”

These days however, Jordan points out that it is not typically what people notice first.

“His hair,” she exclaims. “We get compliments or just comments anywhere we go.”

Greyson’s hair is quite uncombable.

“We would try to comb it over; you know wet it down. We’ve tried every single gel. We’ve tried every single styling cream, everything and nothing,” Jordan explains.

Jordan first noticed it was different when Greyson was less than a year old. It grew slowly. Instead of growing out and down, his hair grew up.

A doctor recommended sending off a sample for testing. The lab results revealed a condition called Uncombable Hair Syndrome.

Jordan was surprised as she had never heard of such a thing. “I started telling everyone and they thought I was kidding.”

It’s no joke. The National Organization for Rare Diseases, a branch of the National Institutes of Health, says the syndrome is the result of a rare genetic mutation which affects the proteins that form the hair shaft.

According to WebMD, scientists only know of about 100 cases nationwide, though many more cases may exist.

Social media has brought some attention to the rare condition. One account showcases a boy in Georgia who has nearly 45,000 followers.

Like any parent, Jordan still has concerns about what her son will face when he gets older.

“That’s a big worry of mine, bullying and all that,” she says. “That is a huge concern of mine because kids are not nice and I hate that, but he can’t help it.”

She prepares for that possibility with positive affirmation and encourages Greyson to embrace his unique look. She even recruited her Alexa device to help.

“She’s set to a routine that tells him good morning and stuff. Then she compliments him at the end. I just want him to know he’s not different than anyone else. He’s just got a little bit of crazy hair,” Montazzoli said.