In an attempt to brighten their lives, the Craniofacial Program Portrait Project paints portraits of children and adolescents with craniofacial conditions to help them see themselves in a different light.
Children born with facial deformities often face numerous sociological and physical challenges throughout life. In an attempt to brighten their lives and really get to know these children, the Craniofacial Program at the Children’s Hospital of Philadelphia (CHOP) began the Craniofacial Program Portrait Project in 2008, the first of its kind in the United States.
Artists at Studio Incamminati, School for Contemporary Realist Art, in partnership with the Craniofacial Program at CHOP and the Edwin and Fannie Gray Hall Center for Human Appearance at the University of Pennsylvania, paint portraits of children and adolescents with craniofacial conditions to help them see themselves in a different light.
On. Jan. 31, Ethan Sarwer, 13, the son of Dr. David Sarwer, associate dean for research of the College of Public Health at Temple University, who helped start the project, displayed the spirit of chesed and tikkun olam as he held his Bar Mitzvah project at Tiferet Bet Israel in Blue Bell, where he raised money and awareness for the project.
“It really touched me and I thought it would be a really special project to help these individuals,” Ethan said.
The first eight portraits were exhibited in 2010 in the Colket Translational Research Building at CHOP, and in November 2013, four additional ones were unveiled, along with a documentary video about the project.
Hillary Waller, the program director at TBI, praised Ethan for his efforts and said the shul always encourages young adults to think outside the box when it comes to their Bar or Bat Mitzvah projects.
“I think Ethan is really an exceptional kid,” Waller said. “We just feel lucky to be able to represent their work at TBI. This is such a special program.”
The project was funded by a grant from the Edwin and Fannie Gray Hall Center for Human Appearance at the University of Pennsylvania.
It was developed by Linton Whitaker, founder of the Craniofacial Program, professor of plastic surgery at the University of Pennsylvania School of Medicine, and founder and director of the Center for Human Appearance; Scott Bartlett, chief of the Division of Plastic Surgery and director of CHOP’s Craniofacial Program; Canice Crerand, former psychologist with the Division of Plastic and Reconstructive Surgery at CHOP; and Sarwer.
Sarwer said their goals were to build on the friendship of Whitaker and Nelson Shanks, who started the Studio Incamminati School in 2002, and bring the organizations together to help children.
“It took a very thoughtful approach to putting it together,” Dr. Sarwer said.
He explained there are hundreds of patients with craniofacial deformities, but they needed the kids to understand the project and know the families could commit to it.
“We also wanted to make sure we weren’t doing any emotional harm to them,” Sarwer said. “This was the first time these kids were being looked at in a non-clinical way. We also wanted to make sure that we had artists that captured the spirit of the project. We’re selective in identifying families.”
“Many of the families who have participated, have found it to be an incredibly important experience, not only for the children, but also the family,” he added.
Sarwer, who only sees the children once a year, remarked how the kids undergo countless procedures and are often looked at in a negative light.
“Just because someone looks different on the outside, doesn’t mean they are a fundamentally different person on the inside,” Sarwer said.
Each of the artists underwent extensive screening before being selected to participate in the program. They include Alisyn Blake, Joseph Dolderer, Stephen Early, Robin Dawn Frey, Kerry Dunn, Debbie Schafer and Leona Shanks.
Frey, a Studio Incamminati graduate and instructor, painted Avery Lytle, 15.
“I thought it was a fabulous idea from the start,” Frey exclaimed. “That’s the kind of thing I like doing, helping others.”
While she has been painting since she was a child, this was different, she noted. She admitted having a child sit still for long periods of time is a challenge, but Avery was a good sport and the two of them bonded.
Avery’s parents, Robert and Molly, were helpful and gave Frey information abort Crouzon syndrome, so it was easier for her to understand what Avery was going through.
“She was a delightful child,” Frey said. “First of all, whenever anyone sits for a portrait, they always come away saying that it was much more enjoyable that they thought it would be.”
In addition to Avery, she also painted a young girl named Gracie. She feels the program impacted them both and still keeps in touch with both families.
“It gives them a feeling of pride in themselves that they haven’t had before,” she said.
Since it started, 12 children between the ages of 7 and 25 have been paired with artists. The portraits, which took six months to a year to finish, were completed over multiple sittings, which enabled each patient, artist and the patients’ family to develop a unique relationship. Patients were able to choose clothes that expressed themselves and to pick out the pose that felt most comfortable to them. Each participant received a framed print of his or her completed portrait.
Lytle, of Pennington, N.J., spoke about his daughter and the project. At 6 months old, Avery was diagnosed with Crouzon syndrome, which causes plates in the skull to fuse prematurely and also affects growth of bones in the mid-face. This results in a sunken mid-face and bulky eyes.
Avery has undergone 20 operations, including a few as an infant, one that removed the back of the skull and several to move the mid-face forward.
“Those surgeries made a big difference for my daughter,” he said.
Lytle said when he and Molly heard about this project, they knew it was perfect for her.
“We thought that it would be a great idea because the doctors are wonderful,” Lytle said. “I think the portrait project was really motivated by the way the doctors began treating the emotional scars.”
While Avery was a bit nervous at first, once she got comfortable with Frey, her mind was at ease, he said. Avery and the other kids aren’t popular in school and are often bullied, but for once, are being shown special attention.
“[Frey] really made this effort to include Avery in the project,” Lytle said. “These kids really become an integral part of the process.
“They are really doing God’s work in trying to address the psychological impact that this condition has on the children,” he added. “I wish there was more funding for it. Our family has been lucky to be a part of it.”