Project
Continued from Page 23
harm to them,” Sarwer said. “This was
the first time these kids were being
looked at in a non-clinical way. We also
she noted. She admitted hav-
wanted to make sure that we had artists
ing a child sit still for long periods of time
that captured the spirit of the project.

is a challenge, but Avery was a good sport
We’re selective in identifying families.”
and the two of them bonded.

“Many of the families who have par-
Avery’s parents, Robert and Molly,
ticipated, have found it to be an incredibly
were helpful and gave Frey information
important experience, not only for the
abort Crouzon syndrome, so it was eas-
children, but also the family,” he added.

ier for her to understand what Avery
Sarwer, who only sees the children
was going through.

once a year, remarked how the kids un-
“She was a delightful child,” Frey
dergo countless procedures and are of-
said. “First of all, whenever anyone sits
ten looked at in a negative light.

for a portrait, they always come away
“Just because someone looks differ-
saying that it was much more enjoyable
ent on the outside, doesn’t mean they
that they thought it would be.”
are a fundamentally different person on
In addition to Avery, she also painted
The paintings seen on these pages are a small
the inside,” Sarwer said.

a young girl named Gracie. She feels the
sampling from the Craniofacial Program Portrait
Each of the artists underwent exten-
program impacted them both and still
Project at CHOP.

sive screening before being selected to
keeps in touch with both families.

participate in the program. They include Alisyn Blake, Joseph
“It gives them a feeling of pride in themselves that they haven’t
Dolderer, Stephen Early, Robin Dawn Frey, Kerry Dunn, Debbie
had before,” she said.

Schafer and Leona Shanks.

Since it started, 12 children between the ages of 7 and 25 have been
Frey, a Studio Incamminati graduate and instructor, painted
paired with artists. The portraits, which took six months to a year to
Avery Lytle, 15.

finish, were completed over multiple sittings, which enabled each pa-
“I thought it was a fabulous idea from the start,” Frey exclaimed.

tient, artist and the patients’ family to develop a unique relationship.

“That’s the kind of thing I like doing, helping others.”
Patients were able to choose clothes that expressed themselves and to
While she has been painting since she was a child, this was different,
pick out the pose that felt most comfortable to them. Each participant
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received a framed print of his or her com-
pleted 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, in-
cluding 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,”
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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.” l
Contact: jcohen@jewishexponent.com; 215-832-0747
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