Life

BY NICOLAS FERNANDES


A woman bullied for her facial differences has learned to love herself thanks to an incredible transformation from 30 surgeries and is now helping to empower others.

Nicole Hilton, 26, of Salt Lake City, Utah, USA, was born with PfeifferSyndrome, a rare gene mutation that causes premature fusion of the skull bones and affects the shape of the head and face.

Bullied by nearly all her classmates who constantly asked her why her eyes were so big left her feeling like a ‘creature’ and made her very self-conscious of the way she looked throughout childhood.

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After going through surgeries from ages one to 20, sometimes as many as five per year, Nicole’s facial abnormalities became less noticeable, with only minor defects in her eyes and ears.

The medical procedures worked to realign her skull and cheeks, moving her midface forward and reducing the size of her eyes.

Thanks to the surgeries she gained confidence as a teenager and has since embraced her condition, now wanting to help others who struggle to accept their disability.

The aspiring therapist is grateful for her facial anomalies because they have inspired her to be more attracted to a man’s personality rather than his looks.

She recently quit her investment banking job to develop the non-profit My Friend Peace, a website that will share stories of people who are grateful for conditions like hers through photojournalism.

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Nicole, who plans to specialize in body image therapy and family relationships, said: “I’m just really grateful for everything and I want others to feel that way too.

“Imagine how great life would be if we all appreciated the things that make us unique.

“My foundation will invite people to share their stories of gratitude. The idea is that everyone can feel at peace through accepting and being grateful for their condition.

“So many of the kids bullied me that there was nothing anyone could do about it.

“People just said offensive things to me all the time. Everyone assumed I had a mental disability because of the way I looked. I was treated like a second-class citizen.

“Once I got into my teens, everything started to get easier.

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I realized early on that there was something much more important than going after the hottest guy in the class, who might not have characteristics that align with my values

“I started to learn how valuable other characteristics can be and looked for other qualities in guys besides looks.”

At the peak of the bullying in seventh grade, Nicole chose to be homeschooled for her final year of middle school.

She said: “It started getting bad and I felt so ostracized, so I thought I would just take a year off.”

In high school, most of her facial features were repaired, but as her body grew, she needed to keep having more surgeries.

She went under the knife to alter the upper part of her face due to it developing more slowly than the lower part.

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Nicole said: “My overall appearance was drastically different, but I needed to keep up with surgeries as my face grew.”

Six years after her last surgery, she can usually go out in public without anyone noticing she has a medical condition.

When telling others about her experience with Pfeiffer Syndrome, which affects one in 100,000 people, it helps to clarify why some of her facial features look different.

Nicole said: “It’s very rare that I get comments from people. Sometimes I’ll catch kids looking at me funny.

“When I tell people, they’ll usually say something like, ‘Oh, I did notice that your eyes aren’t 100 percent symmetrical.’”

Additional surgeries could improve the look of her eyes and ears, but since insurance companies cut-off funding for craniofacial procedures at age 21, further operations aren’t easy.

Nicole said: “I have to brace myself to negotiate with my insurance company.

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“Even though I have gained a lot of confidence, I still try to cover my ears with my hair because they are low set.”

Carolina Summer of Born a Hero: Pfeiffer’s Health and Social Awareness, says that everyone born with the condition has to go through a series of surgeries.

Carolina, the founder and CEO, said: “These kids have to have so many surgeries and wind up missing school a lot. On top of all that, they have to deal with social issues as well as people staring and making unpleasant comments.

“Due to the early fusion of the skull, their eyes appear bigger and their face anatomy is different.”

Carolina added: “There can be many different symptoms including early fusion of the skull, trouble breathing and swallowing, fluid in the brain, hearing and vision problems and limited mobility.

“It is caused by a mutation in the Fibroblast Growth Factor Receptor gene and is autosomal dominant, which means someone with Pfeiffer Syndrome has a five percent chance of passing it on to their children.”

For more information, visit http://www.bornahero.org/.