Charlie Nath, 11, is many things. He’s funny. He’s smart. He’s articulate. He’s courageous. He’s a surfer. He’s a snowboarder. He’s a drummer.
What he’s not, is defined by his rare genetic condition: Crouzon syndrome. He says he wants the world to know, “It’s what’s on the inside that matters the most.”
Changing the world one speech at a time
Crouzon syndrome is estimated to occur in about one of every 62,500 people. It affects each person differently and the severity varies widely. The condition occurs when there is an abnormal fusion of the facial bones and skull, which affects the shape of the head and the appearance of the face. For Charlie, his eyes are set wider apart than normal, he has prominent eyes and his upper and lower jaws don’t align properly.
“Charlie has a mild case of Crouzon syndrome,” said Dr. Michael Cunningham, division chief of Craniofacial Medicine at Seattle Children’s and medical director of Seattle Children’s Craniofacial Center. “There is a tremendous difference in the severity of the condition and how if affects each child. Some kids need surgery in the first few weeks of life, while others may not even notice they have Crouzon syndrome. Virtually all the children we see with Crouzon syndrome are cognitively normal.”
For years, Charlie was teased by his peers because of his appearance. He has memories of children staring at him on the playground, whispering behind his back and recounts of a time a student at his school told him he looked “creepy.” Knowing firsthand the impact of bullying, his mission this past year has been to give a voice to those who have been affected by bullying and to share his personal story to raise awareness.
“I have been teased a lot throughout my life,” said Charlie. “There are many other people around the world who are judged by how they look on the outside. I wanted to make a difference and effect a change.”
Charlie decided to start by educating his peers about Crouzon syndrome by personally speaking to every class in his elementary school. He hopes that in understanding the condition, his peers will be able to see past it, to who he really is as a person. Below is his powerful speech.
Now, he hopes his message will spread outside the walls of his school and will resonate with the rest of the world as well.
A journey to Seattle for care
Charlie was diagnosed with Crouzon syndrome when he was about 6 years old. Charlie and his parents decided to seek out a craniofacial center that could treat the many different aspects of Charlie’s condition all in one place.
“We learned about Seattle Children’s through surgeons I work with,” said Holly Nath, Charlie’s mother, who is a physician in California. “We were looking for an experienced care team who could coordinate all of the different elements of Charlie’s complex condition. We wanted to find the best.”
Seattle Children’s Craniofacial Center is the largest, most comprehensive craniofacial center in the U.S., with more than 50 healthcare providers from 19 specialty areas and has significant experience in treating children with Crouzon syndrome. Over the past five years, the team has treated 31 children with Crouzon syndrome.
“I think my parents picked well,” said Charlie.
After phone consultations, the family traveled to Seattle Children’s Craniofacial Center to explore next steps.
“Each member of the craniofacial team has a very specific role in the management of our patients,” said Cunningham. “We meet every week to talk about complex cases. That’s why we have great outcomes, that and because we have great surgeons. One reason to come here is because we don’t have just one plan for a patient with Crouzon syndrome. We manage each specific patient and customize their care to meet their unique needs.”
After a careful evaluation, the craniofacial team decided surgery was the best option in order to align Charlie’s upper and lower jaws and protect his eyes. They scheduled a Lefort 3 midface advancement that would move the upper portion of Charlie’s face and cheeks into an adult position.
“It’s a really big surgery,” said Holly Nath. “You want to feel like everyone is an expert in their field and collaborate well with each other. The whole team put Charlie in the center of that care. They helped us feel confident, and we trusted them completely.”
A different look, the same Charlie
Charlie underwent the surgery on June 23. After only two days, he was feeling pretty good.
“He’s a great kid,” said Dr. Richard Hopper, surgical director of Seattle Children’s Craniofacial Center, who performed Charlie’s surgery. “He had to be on bedrest for three days after the surgery to let things heal. We forgot to clarify the ‘rest’ part of ‘bedrest.’ Charlie stayed in bed alright, but the team found him doing sit-ups in the bed to stay in shape two days after surgery.”
A week later, the family was on a plane back to California. He has to wear a device around his head for nearly eight weeks while his face is repositioned using pins that are rotated daily. After eight weeks, the device will be removed. Although the surgery was performed to help align his upper and lower jaw, Charlie’s appearance will also change.
“I do not use the term better when describing how the surgery will affect a child’s face,” said Cunningham. “It can give the impression that we, like some others, cannot see past his appearance. We aren’t focused on making the face look better. We’re putting the face where it should be. But most children and families do really like the change in appearance.”
“I’m nervous, but I’m also excited,” said Charlie. “I don’t know what I’m going to look like, but it might be really different.”
Today, Charlie is back in California and getting back to normal.
“It’s not a diagnosis that is limiting,” said Cunningham. “Charlie’s future can hold anything he wants it to hold.”
No matter what face he will see in the mirror in eight weeks when the device is removed, Charlie knows his message to others won’t change, because in the end, it’s what’s on the inside that matters the most.
“When I started this journey I wanted to help inspire others,” said Charlie. “But along the way, I inspired myself.”
And to the doctors who helped Charlie along the way, Nath had a message of her own.
“We flew here from California so we could get the best of the best,” she said. “To the entire care team, thank you! Everything has exceeded our wildest expectations. We feel very lucky to have found you.”