Girl has rare genetic disorder that makes her hair impossible to … – New York Post

A one-year-old girl has permanent bedhead thanks to a genetic condition that makes her frizzy white locks impossible to brush.

Phoebe Braswell, from Smithfield, North Carolina, is one of an estimated 100 children worldwide with a documented case of Uncombable Hair Syndrome.

The condition — thought to have been the cause of Albert Einstein’s wild locks — impairs the protein that gives hair its shape and strength. The hair follicles are also kidney-shaped instead of round.

As a result, Phoebe’s hair is fine, coarse, bright white, tangled and constantly static.

Luckily for Phoebe’s mom Jamie Braswell, 27, Phoebe’s favorite movie is “Trolls” and her favorite character has hair just like hers.


Phoebe Braswell (clockwise from left), her mother’s partner Joey Coupal, Jamie Braswell and Raegan Braswell.SWNS

“You never think that your child is going to have a rare disorder, but I absolutely love Phoebe’s hair. It’s just Phoebe,” Jamie told SWNS.

“She loves the Trolls and Poppy is her favorite, with the pink hair. When Phoebe turns two in three months she’s going to have a Trolls-themed party,” the mom of two said, adding she’s nicknamed her youngest daughter Poppy.

Unfortunately to others who don’t understand the disorder, Phoebe’s hair simply looks messy.

“We were in the grocery store once and a lady said, ‘She is going to hate you when she looks at her baby photos because you let her go out in public like that,’ “Jamie recalled.

But no matter how many times Jaime brushes Phoebe’s hair, it stays frizzy. Hair product doesn’t help either.

“Every morning it is sticking straight up and throughout the day I try and spray stuff in it to keep it down, but within 30 minutes it’s spiky again,” said Jamie.

That’s why Phoebe always has a headband or hair tie in to keep the fly-aways out of her face.

“If she didn’t have that, people would think I was neglecting her,” lamented Jamie.


Phoebe BraswellSWNA

Jamie first noticed something was different about Phoebe when strands of straw-like hair started to sprout from her scalp when she was 3 months old.

She took Phoebe to a doctor who said he’d never seen any child with hair like hers before. After spotting an article on Facebook about Uncombable Hair Syndrome,
Jamie phoned the doctor and got a diagnosis.

The syndrome is caused by a mutation to one of three genes — PADI3, TGM3 and TCHH Phoebe will have genetic testing in August to confirm she has the disorder.

“In total there are 100 cases reported to date in the world but there may be many more which have not been reported,” Professor Regina Betz from the Institute for Human Genetics at the University of Bonn, Germany, said.

There is no cure for the condition, though it is reported to improve with age. Jamie thinks her daughter’s hair is unique, but she fears Phoebe might be bullied when she grows old enough to go to school.

“I do worry about her going to school because kids can be so cruel and Phoebe is the most tender-hearted little girl I have ever known,” Jamie said.

“It’s hard for me to anticipate that people might make nasty comments, but I am going to teach her that we are all different in every way and it doesn’t matter,” she added.

troll-pic
Phoebe Braswell and Poppy, her favorite character from the “Trolls” movie.

SWNS

horse-pic

SWNS

bed-head

SWNS

shopping-cart

SWNS

4

View Slideshow