When Cara McGowan had her child, Taylor, she couldn’t have possibly imagined that her daughter would end up having a rare condition.
In her interview with Buzzfeed News, Cara admits that her family didn’t notice anything strange until Taylor was about 4 to 6 months old. Now, Taylor McGowan is just 18 months old and has a confirmed diagnosis of something called Uncombable Hair Syndrome.
What is Uncombable Hair Syndrome?
Uncombable Hair syndrome is a rare medical condition that affects the hair shaft. As you’ll see in the picture above of Taylor, it silvery-blonde hair or straw-colored hair that pokes out of a person’s scalp and cannot be combed or flattened.
Parents begin to notice most of these symptoms as early as three months after birth and up to about 12 years old. Research on the condition suggests that it’s caused by a mutation of genes involved in the development of the hair shaft.
The role of genetics
One notable insight pointed out by the Genetic and Rare Diseases Information Center (GARD) is that it is caused by recessive genes. This simply means it’s not enough for a single parent to possess these genes. Both parents would have to possess traces of this mutation for it to be transferred to their children, which is why Taylor’s parents don’t suffer the same predicament.
The challenge
Living with this rarity, obviously, has its costs. While there are no known physical symptoms resulting from it, Cara admitted to Buzzfeed News that there have been instances where people will just point and laugh at Taylor. The type of psychological stress this can cause may be just as painful as physical symptoms, especially for children. Thankfully, she has a supportive family and friends.
Cara originally tried various products and techniques to calm her daughter’s hair but has eventually decided upon acceptance. Every one of us is unique in our own way.
As for the condition, in the end it comes down to waiting to see if the child will grow out of it. In some cases, the child’s hair will become darker and more manageable as they age, and in other cases it follows them into adulthood. Only time will tell what Taylor’s hair will look like by the time she is twenty.
The silver lining
While it is a difficult situation, Cara is a strong woman. She’s taken Taylor’s condition in stride and used it as an opportunity to raise awareness about this unique situation. How? In a humorous and bold move, Taylor’s parents have set up a Facebook page to share Taylor’s story.
They called it Baby Einstein 2.0 because she looks like a miniature Albert Einstein. The page features an image of Taylor’s adorable face next to the real Einstein’s surprisingly adorable face. Genius!
The result has been extremely positive. The page has received amazing support from friends, family, and strangers from all over the world. Cara hopes that the page can have a bigger impact and that she can convince more people to accept and celebrate people who suffer from similarly rare conditions.
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