Rising 6th Grader Uses Attitude and Resilience to Overcome Genetic Condition

By Evan Koch

Angeliz Del Valle has a Texas-sized smile and an even bigger personality. The soon-to-be 11-year-old is unabashed when it comes to her aspirations of being a gymnast, equestrian, ballet dancer or actress.

“I am going to be able to do everything I want to do one day,” Angeliz said.

There’s good reason to believe her.

Angeliz has not let any social stigma from having facial differences or more than two dozen surgeries at Children’s Memorial Hermann Hospital—all related to Apert syndrome, a rare genetic disorder—hold her back. Her personality and determination have defeated the physical odds stacked against her.

“She’s an amazing person,” said Liz Pinales, Angeliz’s mother. “She has never complained about pain from her surgeries and she has always found a way to do the things she needs to do.”

Each surgery has helped Angeliz work toward the capabilities many of her peers have, including the ability to hold a pen, feed herself, ride a bike and climb the rock wall on the playground near her house.

But Liz believes a craniofacial procedure pediatric plastic surgeon Matthew Greives, MD, FACS, performed may be most impactful on her daughter’s next phase of childhood: sixth grade and junior high school.

The challenges of Apert syndrome

Bones in Angeliz’s skull, as well as her fingers and toes, prematurely fused together as a result of a rare genetic disorder called Apert syndrome.

Apert syndrome affects about 1 in 65,000 newborns each year. The disorder is characterized by premature fusion of bones in the skull, face and other parts of the body, which results in clearly visible facial differences, fused fingers and toes, and sometimes severe unseen complications.

Cosmetically, the premature fusion of bones in the skull, a condition called craniosynostosis, creates wide-set eyes, the middle of the face being flat or sunken in, and the jaw being underdeveloped. Internally, the fused bones inhibit skull growth and can lead to complications with cognition, vision, hearing, breathing and musculoskeletal function.

That has been Angeliz’s reality since birth.

“Angeliz has had challenges since she was a baby, whether it was holding a bottle or crawling with her feet out,” Liz said. “When she started growing and walking, things started taking longer. It is harder for her to balance.”

She had four surgeries by the time she was a year old and 20 more in the 10 years since. The surgeries have addressed hydrocephalus, the buildup of fluid in the brain; airway issues; ear problems; fused fingers and toes; cleft palate; and several procedures for craniosynostosis.

A distinct personality takes over

Health complications aside, Liz has worried over the years at how Angeliz would be accepted socially based on her facial differences.

“She’s a beautiful girl but she looks different than other kids,” Liz said. “Her appearance didn’t really make a difference with kids her age until she was 4 or 5 years old.”

Angeliz has assuaged her mother’s fears with a superstar personality. She has approached people who have stared at her and asked if they want to be friends. She has brushed off the instances where she has been picked on at school.

“I don’t like being rude,” Angeliz said. “I like being nice all the time.”

She is well-known at Children’s Memorial Hermann Hospital.

Prior to Angeliz’s last craniofacial surgery, she was not able to close her eyes or breathe properly at night because of the restricted space and pressure in her head and face as a result of craniosynistosis.

“Angeliz has been seen by nearly every part of our hospital at some point,” said Dr. Greives, an associate professor at McGovern Medical School with UTHealth. “Despite all the surgeries, I’ve never seen her confidence waver. She is one of the most confident people I have ever met.”

Angeliz is normally one of the first patients to sign up for hospital events, as long as it doesn’t conflict with a scheduled surgery.

“Aside from her medical condition, nothing sets her apart from the other kids,” said Leanne Doringo, MSN, RN, the clinical nurse coordinator for the Texas Cleft-Craniofacial Team at UTHealth. “Angeliz has made friends at our Wonderkids Workshop and Camp for All outings. She is a social butterfly.”

But junior high school is different. There aren’t any playgrounds. There are older kids who may not know her as well as her schoolmates do now.

Angeliz isn’t as worried as Liz is.

“We’ve talked about it, we always want to have good communication with her,” Liz said.

A transformative surgery

The craniofacial surgery Angeliz underwent with Dr. Greives in 2017 was a game changer, according to Liz.

At the time, there was so much pressure from the fused bones in Angeliz’s skull that she couldn’t close her eyes. She didn’t have room between her nose and mouth to breathe properly. Angeliz literally didn’t have room to grow.

“We do want to help children fit in better at school with craniofacial and plastic surgery,” Dr. Greives said. “But the goal of Angeliz’s surgery was to fix the things that kept her from growing.”

The surgery Dr. Greives performed rotated and re-shaped Angeliz’s face to allow room for movement and growth. Following surgery, Angeliz was able to close her eyes at night and could breathe better, allowing her more opportunity to sleep and grow.

The next chapter for Angeliz

Angeliz’s outgoing personality and positive attitude make it easy to be her friend, according to pediatric plastic surgeon Matthew Greives, MD, FACS.

The craniofacial surgery also resulted in a noticeable difference in Angeliz’s appearance. It’s reassuring for Liz as her daughter is about to enter the unknowns of junior high school.

“The surgery has changed Angeliz’s life,” Liz said. “Her face is different. She looks more like other kids now and I think it will be easier for kids to focus more on who she is and less on her appearance.”

Angeliz is unfazed at what will come next in junior high school. If it’s anything like the month leading up to her television debut, everything will be just fine.

Prior to Angeliz’s last surgery at Children’s Memorial Hermann Hospital, she let hospital staff know about an upcoming appearance on KHOU’s Great Day Houston show. She knows what she’s going to say. She’s going to be famous—and even gave one surgeon her autograph.

The moment was a snapshot of how far Angeliz had come and who she is.

“She leads with her personality and everyone responds to that,” Dr. Greives said. “They see her huge personality and it’s like, ‘I want to be your friend.’”

Learn more about the Pediatric Plastic and Reconstructive Surgery Program at Children’s Memorial Hermann Hospital and the Texas Cleft-Craniofacial Team at McGovern Medical School at UTHealth or fill out a Contact Us form.

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Ali Vise