MISSION — Nine-year-old Evelyn Castellon spent her first Christmas in the operating room undergoing three separate surgeries, one of which would allow her to eat and breathe at the same time.
Her mother Vianey Gandaria still can’t talk about it to this day without being overcome with emotion.
“I’m a big crybaby,” she cautioned just moments before the knot in her throat kept her from speaking.
Evelyn was born with Treacher Collins Syndrome, a rare genetic disease that alters the structure and development of the bones and tissue in her skull, her pediatric plastic surgeon Kevin Hopkins said.
Hopkins, a specialist at the Craniofacial & Cleft Center at Driscoll Children’s Hospital in McAllen, believes it’s the same condition featured in the newly-released film titled Wonder.
The movie highlights the struggles of young August Pullman, who looks physically different from his peers, as he enters fifth grade.
Evelyn and her family are no strangers to the plight.
The young girl has been home bound all her life and is just getting ready to enroll in second grade. But the move is causing some anxiety for her family, who is no stranger to the stares and questions people often have for Evelynn and her parents.
‘WILL TO LIVE’
Most children who are born with the condition tend to suffer from an array of facial disfigurements, Hopkins said.
“The kids notoriously don’t have that cheekbone, and then they usually have small chins,” he pointing to the replica of a child’s skull.
A lot of times they have hearing problems because they don’t have the external auditory canal and a majority of them, like Evelyn, need a tracheotomy.
“She does have some of her (cheekbone) arch here, but it’s short and missing some parts,” Hopkins said. “And also she’s got a very small mandible. That’s why she has a tracheotomy because when she was born, you know, she had such a small mouth that the tongue had no room.”
The nine-year-old was not immediately diagnosed with the condition, her lifelong-nurse Rosa Vazquez said. But doctors began paying attention after the newborn started turning purple while trying to eat.
“She was very small. She used to fit in my hand,” recalled Vazquez, who has also earned the “mommy” title. “She had to choose between crying, breathing and eating.”
Shortly after being diagnosed, Evelyn had to undergo three surgeries at just three months old. On Christmas Eve 2008, surgeons worked on her heart. The following day, on Christmas, they gave her a tracheotomy to help her breath and inserted a G-tube to help her eat.
“When she was small, it did look very grim,” her mother recalled before choking up again.
But Evelyn persevered.
“Through it all, we noticed her eyes were full of life,” her mother said. “She had the will to live.”
And that will is still evident today.
‘FASCINATED WITH LIFE’
Evelyn comes off as timid at first, but she soon reveals her true colors.
The lanky girl with waist-long hair does not hesitate to show others the self-made videos that feature her singing or imitating popular TV shows. Instead, she beams with pride as others watch her strut across her bedroom while holding what can only be considered a microphone.
Latin heartthrob Maluma is her favorite artist now and she’s not so sure about liking Justin Bieber anymore.
“She likes to dance and record herself,” her mom said. “She’s very social.”
Evelyn has no trouble recalling the names of her gal pals, which she said she met “in the streets.”
“She’s fascinated with life,” her mother said.
And while Evelyn lives her days like any other child would, she can’t help but notice some differences.
The self awareness began when she was about four years old, her mother remembered.
“Why don’t I have my face like most girls,” she often asked her mother. “Why doesn’t my hair hold behind my ears?”
Eventually, Evelyn was taught to understand the differences stemmed from being “special.”
“God sent you to do something great here — to educate us about what you have,” her mother tells her. “You are such a special girl.”
“She does feel bad sometimes because kids will come up and ask, ‘Why do you have that,” her nurse said about the girl’s tracheotomy. “‘When are they going to remove it?’”
But Evelyn’s learned to simply reply, “It helps me breath” — even when no one dares to ask.
“She’s already surpassed it,” her mother said about her condition, though she still worries about the road ahead.
TESTING THE WATERS
Evelyn is over the moon about going to school, and she’s already being slowly introduced into a classroom setting. Every Friday, she goes to Americo Paredes Elementary to take an hour-long test.
She’s already been introduced to students, and on Friday, she had lunch at school for the first time in her life. Accompanied by her younger brother, the nine-year-old seemed to enjoy a ham sandwich and a couple slices of orange.
“It was good,” she said about her overall lunch experience, which included a trip to a sticker vending machine that dispensed a row of small anchors.
The La Loya school district is working with Evelyn’s parents and her doctors to come up with a curriculum and schedule for the second-grader.
“We need to make certain that the personnel is up to date and very aware of how they’re going to be dealing with this child,” La Joya Counseling Director Myriam Tellez said.
That includes anti-bullying efforts.
“Unfortunately bullying is a national epidemic,” she said. “It exists everywhere. All we can do is try to prevent it and minimize it.”
The school adheres to a year-round anti-bullying effort that includes wearing blue shirts on Mondays to raise awareness and a series of informal meetings between teachers and their classrooms.
“It’s unstructured,” Tellez said about the alloted meeting times. “It’s intended to build relationships with the teachers and students to make it easier to confide in each other.”
All of the district’s libraries are also circulating the book Wonder, on which the movie is based, she added.
“It’s bad enough being a kid these days as it is, let alone you have anything going on that is physically different,” Hopkins, Evelyn’s physician said. “I think the more aware we are, the better we can help them.”
THE FUTURE
Hopkins will likely perform several surgeries for Evelyn in the near future, including the extension of her jaw.
“Her problem is that she can’t open her mouth,” the pediatric plastic surgeon said. “Even brushing her teeth in the back is hard.”
Evelyn has some cavities but dentists can’t fit instruments in her mouth, her mom said.
“Poor kids have a ton of problems going on — each one,” Hopkins said, “There’s different severities of the presentation.”
He hopes to also work on her cheekbones, but the timing of each surgery must be planned based on her growth and development.
Still, Evelyn can hardly hide her excitement at the thought of filling her cheeks.
“I’m going to get cheeks with meat,” she often reminds her mother, who asks only that her daughter be given a chance at life without prejudice.
“Give her the opportunity to meet and see her for the great human being that she is,” she said holding back tears. “It’s not contagious. Don’t be scared.”
Hopkins is willing to meet with teachers and students to help them understand Evelyn’s condition.
“I think the more people know about what’s going on, the more they’re not going to pick her,” he said.
