Diego, now 9, is a joyful, outgoing child who loves to play soccer. But right after he was born, his parents, Ibis and Omeil, noticed the first sign that something was wrong: His eyes appeared to bulge slightly. When his pediatrician examined him that first week, she couldn’t feel the soft spot in his skull that should exist and be pliable in newborns. 

X-rays revealed the diagnosis: craniosynostosis — specifically, multisuture craniosynostosis, a rare form of the condition in which more than one of the fibrous joints between the skull bones fuse together too early. In a healthy infant, those sutures remain open for years to allow the brain room to grow. When they close prematurely, the skull can’t expand in the right places, and pressure builds against the developing brain and eyes.

“Our world turned upside down,” says Ibis. “We didn’t know anything. It is so rare.”

“It was hard to find information,” says Omeil. “Especially because it was multisuture.”

Further testing identified the underlying cause: a gene mutation consistent with Crouzon syndrome, a genetic disorder that affects the bones of the skull and face.

At the time, Diego’s family was living in Florida, and the craniofacial team there needed to move quickly. At just 4 months old, Diego underwent his first surgery to relieve the pressure on his brain. Ultimately, his long medical journey required 10 surgeries to date.

“Every challenge has been new,” Ibis says.

CHOP is ‘the perfect place’ for him

Before the family relocated to South Jersey in 2023 for Omeil’s job, they told Diego’s Florida care team they were moving. The response was an immediate endorsement of the expertise at Children’s Hospital of Philadelphia (CHOP).

“They said, ‘Oh, then you’re going to CHOP! We’ll transfer all his records. There’s no better place — it’s the perfect place for Diego,’” Ibis recalls.

Under the care of Scott P. Bartlett, MD, Co-Director of the Craniofacial Program at CHOP, Diego and his family found not only the highest level of care but also a team that treated them with warmth and compassion at every step. The experts at the Division of Plastic, Reconstructive and Oral Surgery have vast experience treating the full spectrum of plastic surgical conditions. CHOP also knows that children with these conditions have unique emotional needs and offers psychosocial support for the child and whole family.

His toughest surgery

In December 2024 at CHOP, Diego underwent the most complex surgery of his life: a procedure, called a Le Fort III distraction osteogenesis, to pull forward the bones of the upper face, including the cheekbones, nose and upper jaw. Also known as midface advancement, the surgery involves carefully separating the bones of the upper face, then slowly moving them forward over several weeks.

At the end of the surgery, a specialized device called a “halo” distractor is attached to the child’s skull. Twice a day, a parent turns small screw posts connected to the device, gradually bringing the midface forward at a rate of 1 to 2 millimeters per day. It is a challenging process that needs to happen for nearly three months.

Omeil took on the job of turning the screws each day. “That was rough,” he admits.

Ibis explains, “I was the good cop, he was the bad cop. But you had to turn them.”

Because Diego was older this time — more aware, more verbal — everything carried a different emotional weight for his parents. “He told us more,” Ibis says simply.

Diego spent the holiday season recovering at CHOP. The staff made sure the weeks were filled with cheer and positivity. Diego was worried his Elf on the Shelf wouldn’t visit him while he was in the hospital. The night nurses made sure that the Elf on the Shelf was in a new spot every day.

Going to school wearing the halo

When Diego left CHOP wearing the halo device, his parents arranged for a teacher to come to their home for lessons. But soon Diego told his parents he wanted to go to class, in person, halo and all.

To prepare, his school’s principal visited every classroom before Diego arrived, making a presentation to explain to the students what to expect. “So, when Diego was there, everything was great, and it was a very safe environment,” says Ibis.

When the halo finally came off, the school celebrated. One month later, Diego tried out for his travel soccer team — and made it! His coach’s first words to the family: “Your kid has got a lot of passion.”

Looking ahead

“The halo transformed everything,” Ibis says. “He’s had a full facial transformation.”

Diego’s journey isn’t over. Regular CT scans continue to monitor his skull, and his CHOP team is now focused on his dental development. He has appointments with Hyun-Duck Nah-Cederquist, DMD, PhD, Director of Craniofacial Orthodontics. “There’s not enough space for his teeth,” Omeil explains. “He needs a couple of dental surgeries.”

Through it all, Ibis and Omeil have witnessed their son’s incredible strength. Diego’s usual response is, “I’ve got this, Mom. I believe in myself.”

“Finally, we’re in a space where we can breathe,” Ibis shares. The family now pours their heart into CHOP fundraising events, including the inaugural I 🖤 CHOP Run, Walk & Virtual Challenge event in April 2026. “We can give back and raise awareness. Because even with this rare genetic condition, after all these surgeries, you can still be a regular kid — someone who loves to dance, be silly with his family and friends, and play travel soccer.

The family has been inspired “in ways we never imagined,” Ibis says. “Today, we feel a newfound clarity. We’re so excited that Diego, and all of us, can give back and spread hope. Diego is more motivated than ever, and we are so blessed to be his parents and to walk this journey with him.”