This baby was born with a rare genetic condition known as ‘uncombable hair syndrome’

It doesn’t matter who we are or what our station is in life, we have all had to deal with a bad hair day. Some of us may have them on a frequent basis and when we wake up in the morning, we might find what is staring back at us in the mirror to be either amusing or perhaps a little bit disturbing. We all handle it in the same way; we comb our hair and go about our day.

Believe it or not, there are some people who have more than a bad hair day, they have a bad hair life. It may sound unrealistic but there is a genetic issue that occurs in a very small number of the population that is known as uncombable hair syndrome. It is so rare that it only affects approximately 100 people in the world!

One of the few individuals who experience this rare syndrome is Taylor McGowan. Most of us have hair that grows downward but her hair grows outward from the scalp in almost every direction imaginable. Even though the 18-month-old child has hair that is impossible to style, she still looks incredible.

Taylor’s mother, Cara, said that she looks amazing. She even compares her to being a miniature Albert Einstein. She described her daughter’s hair in this way:

“It stands completely on end… It can be placed in a ponytail that will often stick straight up through the top of her head. We’ve tried dozens of products at this point.”

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So what is it that causes this condition? In order for an individual to be born with uncombable hair syndrome, they need to inherit two copies of a mutated gene. Each gene would come from one of the parents. The gene that is mutated is responsible for the shape of the shaft of the hair.

It didn’t take long before Taylor’s family recognized that something was different. She was about five months old when they recognized her hair was “a little unique.” They called her hair ‘fuzzy’ and thought that it would eventually fall out. Unfortunately, however, her hair stayed just as it is.

When a family member saw pictures of other children who have this syndrome, they wondered if Taylor might have it as well. Cara thought that it was quite a stretch.

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Cara said: “We essentially laughed it off. We thought there is no way that our child could possibly have this ultra, ultra-rare condition that only affects 100 people worldwide. And we were completely wrong.”

She ended up contacting Regina Betz, a professor of dermato-genetics at a German university. That is when they got quite a surprise.

Taylor’s blood samples were sent to Germany and they found that their daughter did have the gene mutation that would cause this syndrome. Specifically, she had the PADI3 gene mutation. Since it is a recessive gene, it was necessary for her to receive it from each of her parents. If she had only gotten the gene mutation from one parent, the syndrome would not have appeared.

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They aren’t really sure why this condition tends to improve as the individual gets older. They may end up with hair that is relatively normal and lies flat by the time they are an adolescent. In some cases, however, the syndrome has been a problem for life. Taylor’s mom is positive of the fact that her daughter will be fine, regardless of the outcome.

“Maybe it will resolve and maybe it won’t,” she said. “I have met both. Individuals who are now adults who appear to have grown out of it – their hair has darkened and it no longer stands completely on end but perhaps it gives them a little bit of trouble – and on the other hand I’ve seen adults struggle very much with full, frizzy, hard-to-manage hair.”

There are times when this young girl gets left out, and some people compare her to Albert Einstein. Actually, it may be possible that Albert Einstein also had this condition. There have even been those who ask if she stuck her finger in a light socket.

Rude comments aside, her parents are determined to bring about more understanding about the condition. “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. Being different is okay, being different is acceptable and it should be celebrated.”

We are also confident that Taylor is going to be fine. It seems as if she has a great support system behind her.

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