Strangers inquired, “Did she insert her finger in the power socket?” They were being inconsiderate and uneducated.’ ‘I look like a lion with a crazy mane,’ a young girl says of her ‘fuzzy’ hair caused by Uncombable Hair Syndrome.

“Shilah was just like any other little girl when she was born. She was delivered at 36 weeks after an entirely normal pregnancy. We were ecstatic to welcome a new girl into our family, and her older brother Taelan was probably even more so.

Courtesy of Celeste Calvert-Yin / @shilahmadison
Courtesy of Celeste Calvert-Yin / @shilahmadison

Shilah, like her brother, was born with lovely brown hair. However, it was replaced with blonde strands that looked exactly like my own as it began to come out. Her blonde hair and blue eyes were so stereotypical. We observed something different at 3-6 months of age. Her hair was not flattening down and was sprouting straight up. It was delicate, almost glistening in the sunshine. Others began to comment, which piqued our interest even more as to why and what was going on. They’d ask, ‘What’s wrong with her hair?’ It was unpleasant and, at times, harsh, but I’m sure it was just ignorance and insensitivity on their part.

Courtesy of Celeste Calvert-Yin / @shilahmadison
Courtesy of Celeste Calvert-Yin / @shilahmadison

Then there were the folks who would peep into her pram, gaze at her, and make disparaging remarks about her wherever we went. A common remark was, ‘Looks like she jammed her finger in the power socket.’ People would frequently approach her and ask to touch her hair or come up to her and touch her hair out of the blue. This irritated my husband and me as parents, and we made it clear that it was not acceptable. ‘Do you mind if I ask you a question?’ We don’t go around touching your kids because she’s a baby.’

Courtesy of Celeste Calvert-Yin / @shilahmadison
Courtesy of Celeste Calvert-Yin / @shilahmadison
Courtesy of Celeste Calvert-Yin / @shilahmadison

The worst were probably folks who took pictures of Shi without her permission and then pretended they weren’t when they were found. I often recall my spouse requesting that individuals remove what they had taken.

We lost track of the number of individuals who inquired about her hair, and we had no idea what to say since we had no notion.

Courtesy of Celeste Calvert-Yin / @shilahmadison
Courtesy of Celeste Calvert-Yin / @shilahmadison

Everyone had suggestions for what we should do, but none worked. It continued to grow straight up. It didn’t matter what we did. One person advised us to shave her head so it can grow back normal.’

We figured it was a gene from our family’s past and left it at that. So we explained that it could be a relic from one of our family’s pasts, and everyone was okay with it. Alternatively, I could have stated that she was ‘gifted with her hair and born to be recognized.’ That made it easier for kids to comprehend.

Courtesy of Celeste Calvert-Yin / @shilahmadison

Shi’s hair grew longer with age, but it never went beyond a particular length. Instead, it would simply snap off at the root, appearing quite delicate. Every day, I had to fight knots and tangles. She’d lose a lot of hair just brushing them out if you tried to sort them out. She has spent countless hours in tears attempting to resolve the overnight dreads, and she now sleeps on a pure silk pillowcase, which has made a significant difference for her.

Courtesy of Celeste Calvert-Yin / @shilahmadison
Courtesy of Celeste Calvert-Yin / @shilahmadison

Even though her hair has never grown longer and is still relatively short in the back from sleeping on it, she can pull it back into a top-notch and wear clips to keep it out of her eyes. It just appears to be a lot fluffier and thicker.

Courtesy of Celeste Calvert-Yin / @shilahmadison

I recall a stranger comparing her to Doc Brown from Back to the Future since she was dressed in a lab coat. ‘Your daughter has a striking resemblance to Doc Brown, the character in the film.’ ‘That crazed scientist!’ Others frequently referred to her as having ‘Albert Einstein’s hair.’ They were right on, and we had a good laugh about it in the office. She did have Doc and Einstein’s crazy wispy hair, but it wasn’t something any little girl wanted to be compared to.

Courtesy of Celeste Calvert-Yin / @shilahmadison

On the other hand, Shi has always been proud of her appearance. She’d never known anything else. ‘Just call me fuzzy,’ she would say sweetly. On some days, I resemble a lion with a wild mane.’ When I returned to work, Shi and her brother Taelan were both in childcare, which I believe was quite beneficial. She was shaped and strengthened due to her ability to articulate exactly what she was thinking. She was self-assured and sarcastic, and she quickly figured out how to use her individuality to her advantage. She’d tell them she was magical and unique,’ while others were just ‘ordinary and uninteresting.’

Courtesy of Celeste Calvert-Yin / @shilahmadison

At times, she found it challenging because she wished she had long hair like everyone else and only wanted a ponytail. So, when she was about four years old, she chose to cut her hair. She shaved off all the hair on the front of her head that didn’t reach her ponytail. We were heartbroken because we knew her hair didn’t increase, and she was even more frustrated because it was suddenly spiked straight up and couldn’t be cut. She hid her actions by wrapping a piece of material around her head like a scarf for a week.

Courtesy of Celeste Calvert-Yin / @shilahmadison

She was angry when she first saw Disney’s “Frozen” because her hair didn’t look like Elsa’s, and she couldn’t wear her hair in a lengthy braid. ‘Her hair was more like Rapunzel’s because it is truly amazing,’ I recall instantly telling her. From that day forward, we told Shi to embrace her individuality and never be concerned with what others think of her. In our house, boosting her self-esteem and confidence was a priority. Her brother was always there for her when she needed it and when the kids were mean to her.

Courtesy of Celeste Calvert-Yin / @shilahmadison

As parents, we were apprehensive about our children starting school. How will she be received on the schoolyard? What do you think they’ll say to her? Will she be able to make friends? All of them were swiftly answered — she was a massive hit with the entire school, from kindergarten to grade six! Shi was a mini-celebrity who loved being the center of attention.

Courtesy of Celeste Calvert-Yin / @shilahmadison

She requested that we take her to the hairdresser one day, so we did. The lady was even more perplexed, having never seen blonde hair like it in her 20 years of expertise. Because it was so fluffy and sticking straight out, she didn’t know how to cut it. She offered to straighten it, but the heat would scorch her hair, which was more newborn-like than anything else.

After numerous hairdressers touched and played with Shi’s hair, one of the ladies suggested that we go to an African Salon since they would be more familiar with her hair. So, from then on, whenever Shi wants her hair braided or groomed, we go to the salon.

Even though her hair is nothing like African hair, the ladies enjoy toying with it and occasionally style it in the most inventive cornrows for her. Shi’s hair isn’t coarse; it’s incredibly soft and fluffy and doesn’t get oily. She doesn’t require oils or leave-in conditioners; she needs gentle natural products and a decent detangler.

Courtesy of Celeste Calvert-Yin / @shilahmadison

She has only had one and a half haircuts in her life. One to repair the part she’d already broken! It simply does not extend beyond her existing length.

People constantly suggested that we take her to the doctor to determine why her hair was falling out, but we saw no reason because she was healthy. It was only her hair, and it was only Shilah. However, while Shi was in the hospital for her teeth, the doctor caring for her asked us a probing inquiry.

‘Do you know what Uncombable Hair Syndrome is?’

I’d never heard of it before, and I was perplexed. According to the doctor, UHS is caused by a gene mutation characterized by silvery blonde or straw-colored hair that rises from the scalp and cannot be combed flat. The doctor had looked into UHS but had never met a child who had it. I was stunned, moved to tears, and ecstatic all at once, finally having an answer to all those years of wondering. The doctor was equally ecstatic.

Courtesy of Celeste Calvert-Yin / @shilahmadison

With our permission, the doctor examined Shilah to ensure she didn’t have any other common symptoms in children with UHS.

We now know Shi’s teeth have weaker enamel and are prone to breaking, but she is otherwise healthy. This means that each of Shi’s hair grows differently than ours. It’s slightly heart-shaped and lacking a protein, which explains why it grows straight out and appears curly and kinky.

We were overjoyed to have received a response, but now it was time to share it with everyone to make a difference and assist others throughout the world. But first and foremost, we needed to explain to our parents why our little girl was unique – perhaps just one out of every 100 people on the planet.

Courtesy of Celeste Calvert-Yin / @shilahmadison

She enjoys being the center of attention and snapping selfies, so we tried modeling, but companies were concerned that her individuality would detract from their brand, so it didn’t work out. ‘She is stunning, but her style is one-of-a-kind, and the company may struggle to make the product memorable.’

We then decided to devote a little more time and attention to Shilah’s Instagram page, @shilahmadisonn, which she will manage once she is old enough. We’ve touched people worldwide through Instagram, and we’ve made a significant difference in the lives of other families who were looking for answers in the same way we were. People are continually seeking guidance and submitting images of their children in the hopes that they, too, have discovered the solution. This is highly inspirational.

We’ve met kids and adults who, like Shi, have gone through or are going through the same things she has; they look up to her and her positive attitude about being different and unique, as well as how she approaches the world as a little girl.

It’s a powerful tool, and it’s meant a lot to show Shilah how much support she has and help someone else with Uncombable Hair Syndrome.

‘There’s nothing wrong with standing out.’ If other people look at you, it’s because they’re jealous,’ Shilah says.

Courtesy of Celeste Calvert-Yin / @shilahmadison

It’s an excellent forum for her to communicate with folks who want to encourage her or for parents to tell their children, ‘Look, you’re not alone.’ You’re not alone, and this little girl is adorable!’

Shilah chooses her images and what she wants to share with others; she responds to everyone who contacts her, and she enjoys doing so. She has a few pen pals and regularly receives thank-you letters and postcards from all over the world.

We wouldn’t trade her for anything in the world as a family. We believe she has a bright future ahead of her. She has the tenacity, attitude, and personality to make an impact. I’d be lying if I said it was easy for her, but if anyone can own their appearance and deal with the comments and looks, it’s her.

‘All you have to do is love yourself, mama.’ ‘Who cares about the rest of the world?’ she recently asked.

She is a source of inspiration for us!!!”

Courtesy of Celeste Calvert-Yin / @shilahmadison

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