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Mom of Adorable Baby Opens Up About Her Genetic Condition Called Uncombable Hair Syndrome

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Meet Taylor McGowan, an 18-month-old baby girl living the wild hair life. Taylor lives with a genetic condition called uncombable hair syndrome, meaning this little girl’s wild mane cannot be tamed.

Taylor’s mother, Cara McGowan, has taken the lead in educating others about her daughter’s rare genetic condition. In an interview with Buzzfeed, McGowan explained what it’s like to raise a daughter with uncombable hair syndrome.

“Her hair looks amazing, like she’s a mini Albert Einstein,” McGowan said. “It stands completely on end.”

Taylor’s hair condition is so rare, only about 100 people worldwide have been documented as having the same syndrome.

Each hair shaft on Taylor’s head has an unusual shape that results in flyaway, stand-up-straight hair, making it difficult to style.

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“It can be placed in a ponytail that will often stick straight up through the top of her head,” McGowan said. “We’ve tried dozens of products at this point.”

When Taylor was a baby, her family noticed her hair looked a little atypical. A family member saw photos of uncombable hair syndrome, and thought Taylor’s hair looked quite similar.

“We thought, ‘there is no way that our child could possibly have this ultra, ultra-rare condition that only affects 100 people worldwide,'” McGowan said. “And we were completely wrong.”

A blood test confirmed that Taylor did, in fact, have a PADI3 gene mutation, one of the possible three gene mutations responsible for the condition. Taylor’s parents, Cara and Tom, learned they are both carriers of the recessive gene.

In some cases, children grow out of the hair condition over time, and their hair changes. McGowan has started networking with others who have uncombable hair syndrome — some have outgrown it, some have not.

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Regardless of what lies ahead for Taylor’s hair, McGowan wants to spread a message of acceptance and love for kids who look different than everyone else. McGowan has started a Facebook page on behalf of Taylor, Baby Einstein 2.0, aimed at educating others on the importance of self-love and body positivity.

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“Our message that we would like to spread is one of accepting diversity, loving oneself, and recognizing bullying and what it looks like and making it stop,” McGowan said.

“Being different is OK, being different is acceptable, and it should be celebrated.”

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A graduate of Grand Canyon University, Kim Davis has been writing for The Western Journal since 2015, focusing on lifestyle stories.
Kim Davis began writing for The Western Journal in 2015. Her primary topics cover family, faith, and women. She has experience as a copy editor for the online publication Thoughtful Women. Kim worked as an arts administrator for The Phoenix Symphony, writing music education curriculum and leading community engagement programs throughout the region. She holds a degree in music education from Grand Canyon University with a minor in eating tacos.
Birthplace
Page, Arizona
Education
Bachelor of Science in Music Education
Location
Phoenix, Arizona
Languages Spoken
English
Topics of Expertise
Lifestyle & Human Interest




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