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Lawtey girl, 4, among small group living with uncombable hair syndrome

A little girl from Lawtey is dealing with what her family believes is a rare medical condition that causes her hair to stand up straight.

Evelyn Cubbedge, 4, wears a bow that holds a head of hair that's different from most. Her mom believes she has what's known as "uncombable hair syndrome."

RELATED: Girl, 7, among group living with uncombable hair syndrome

“All the information I have read says it is exactly what she has,” Nicole Cubbedge told Action News Jax.

According to the National Institutes of Health, UHS is caused by rare genetic mutation of the hair shaft on the scalp. Experts say there are only 100 known cases worldwide.

Evelyn's mother says her daughter was born with almost no hair. By the time she was 1 year old, her hair stood straight up on her head, her mom said.

Cubbedge said has tried everything to comb Evelyn's hair, but products from oils to flatirons have not worked.

“She usually gets Einstein or crazy hair, but we call it unique," Cubbedge said.

Evelyn's three brothers aren't affected by the condition.

Experts say the condition usually ends with puberty, but in the meantime Cubbedge says she is seeking out opinions from doctors.

“We tell her all the time she is beautiful inside and out and her hair is beautiful," Cubbedge said.