By Tiffany Merlo Phelps
Ponte Vedra Beach resident Scarlett Carson was in the third grade when she underwent her third brain surgery, leaving her face swollen, bruised and throbbing. During her recovery in New York City and in an attempt to get fresh air, she reluctantly attended a myFace gala held at the Central Park Zoo (shut down for the occasion) where others with facial differences were also in attendance. myFace is a non-profit organization dedicated to changing the faces and transforming the lives of children and adults with facial differences.
That moment of inclusion in 2014 impacted Carson deeply.
“I realized that I was not alone. I saw love and compassion from everyone around me. I realized how very lucky I am,” said Carson, now 17.
Today Carson is a myFace Ambassador, sits on the NYU Langone Sala Institute Youth Advisory Council and plans to help start a local support group. Her journey to this point has been a long one filled with 14 surgeries, long painful recoveries and time spent away from friends and family. Yet, she still sees a purpose.
“All of this has taught me that I love helping people,” said Carson, a Ponte Vedra High School junior. “It is my past. It will always be who I am, but I am ready now to move on and help other people through these same struggles.”
Carson was born with craniosynostosis and was diagnosed when she was around two months old. It is a condition in which one or more of the fibrous joints between the bones of the baby’s skull (known as sutures) prematurely fuses before the brain is fully formed. As the baby’s brain grows, the skull can become misshapen. Carson’s mother, Suzette, knew that something was wrong when she noticed that Scarlett’s forehead bulged, one eye socket was lifted and she had a nose tilt.
At five months old, Scarlett had her first brain surgery in 2005 at Wolfson Children’s Hospital. One year later, she was still having headaches, severe nose bleeds, short-term memory loss, vision issues and had facial differences.
“We knew in our gut that something was wrong,” said Suzette Carson, who has four other children with husband Cleigh.
In 2008, the Carsons found a new path in the most unlikely place. Cleigh Carson was coaching his son’s baseball team when two dads asked him if Scarlett had craniosynostosis. One was a medical equipment supplier owner and the other a medical sales manager. They shared information about surgeons and who they would see if their own children had the condition.
Enter Dr. David Staffenberg in New York City. In one meeting, all of the Carsons’ concerns were finally acknowledged, identified and a team of doctors stood ready to handle everything all in one location.
At four years old, Scarlett had her second brain surgery. Her third took place at nine years old and her last surgery was at 14 years old. During one surgery, a team of doctors operated on Scarlett for close to eight hours.
“My doctors came in as a team and acted as a family,” said Carson.
For two of the surgeries, the Carsons used the myFace Apartments across the street from the hospital which made a huge difference. Prior to that, the Carsons had to stay at hotels.
Once able, Carson preferred recovering at the apartment as opposed to the hospital. It was a true blessing and a lifesaver, said her mom, especially given the long stays and follow-up appointments.
“This organization helps with surgery expenses, partners with the airlines so families can fly for free and offers resources,” said Suzette Carson.
Now fully recovered, Scarlett Carson is on the weightlifting team, runs, plays basketball and drives — acclimating to limited vision in her right eye and mild hearing loss in her left ear. She refuses to let anything hold her back.
Also, the Carsons credit Palmer Catholic Academy, Ponte Vedra High School, family, friends and New Yorkers with giving Scarlett Carson so much support. It was at Palmer that she was able to present a “Wonder Project” video to students, a presentation made for and in conjunction with myFace. “The myFace Wonder Project” was inspired by the book written by R.J. Palacio. (“Wonder” is based on a child with a rare genetic facial deficiency.) The book and movie by the same name underscore the power of kindness which is fundamental to “The myFace Wonder Project” and its curriculum guide.
For Carson, the project helped her to understand who she was becoming and gave her a chance to connect with her peers. Dina Zuckerberg, myFace Family Programs Director, said there is power in a shared story.
“It makes you realize that you are on this journey with someone else,” said Zuckerberg, who is also a myFace patient.
Zuckerberg gives “Wonder Project” presentations about her own story in person and virtually. She said that Carson was the first person who chose to do the video on her own and take the lead.
Another goal of the “The myFace Wonder Project” is to help students unite against bullying and to implement acts of kindness in school.
“I like to promote being an active upstander, not a passive bystander. If you see bullying, stand up,” said Zuckerberg.
Email Dina@myface.org for more information on myFace and to arrange a virtual “Wonder Project” school assembly.
Photo courtesy Suzette Carson
Scarlett Carson at a Ponte Vedra High School fundraiser for myFace, sponsored by the school’s cross country team.