RICHMOND, Va. (AP) — Heavenli Hill loves English class and digital photography. She especially likes to take photos of nature. She is, in many ways, an average 12-year-old — and she also has Treacher Collins syndrome.
Considered a craniofacial condition, Treacher Collins is a genetic disorder characterized by downward-slanting eyes, a small jaw and underdeveloped cheekbones and ears.
On Dec. 20, Heavenli enjoyed a rare treat: Seeing someone on the silver screen with the same condition she was born with. She feels the connection of shared experience with August Pullman, the protagonist of the novel “Wonder” by R.J. Palacio, which has been adapted into a film starring Julia Roberts and Owen Wilson.
“He’s in the same situation that I am,” said Heavenli, who lives in Chesterfield County. “He has Treacher Collins, and we both get made fun of, and we both get surgeries.”
There aren’t many representations of people with craniofacial conditions — a broad term applying to malformations of the face and skull — in pop culture. Many of the children born with it struggle to be accepted in school and in public, so seeing someone who looks like them on the big screen can make a big difference.
Heavenli receives care at the Center for Craniofacial Care at Children’s Hospital of Richmond at VCU, which held a special viewing of the film Wonder for all its patients and their families. Some of the kids have already received craniofacial surgery.
But the surgery is just one part of the children’s treatment, explained pediatric plastic surgeon and director of the center Dr. Jennifer Rhodes.
“We have to make sure that, on the inside, that child feels good about themselves and believes they can achieve their dreams,” Rhodes said. “It is a lot of emotional support.”
The center works with other disciplines at the Children’s Hospital of Richmond at VCU, such as speech therapists and child psychologists, and it receives contributions from the MCV Hospitals Auxiliary to hold confidence-building activities like themovie showing. The center was able to rent an entire theater at Bow Tie Cinemas in Richmond to show the film.
“We think it’s really important to keep our kids engaged and so they don’t just see us (for) medical procedures,” Rhodes said. “We want them to realize we see them as humans.”
Craniofacial conditions include a wide variety of conditions. The most common is cleft palate or cleft lip, but the center works with any patients that have some sort of condition that affects the head, skull or face, or any sort of visible birth defect.
Rhodes said she’s heard horror stories about how the children she spends every day with now were once treated.
“Fifty years ago, the culture was different,” she said. “We have some adult patients, one in particular I’m thinking of whose mother I know, who told me that 50 years ago, when her child was born with a craniofacial disorder, the doctors told her to institutionalize him and never look at him. She said she had to fight to keep her own baby.”
The center advocates for its children and their families whenever it can, Rhodes said. The entire family needs support because they face challenges in all areas of their lives, including their financial and social lives.
That’s why it’s so important that the kids and their families see themselves in films and books. Rhodes and the center’s program coordinator, Ruth Trivelpiece, have even been part of a team working on a picture book called, “Jack’s New Smile,” about a child with a cleft palate and lip. They hope to make it the first in a series about kids with craniofacial disorders, so kids see themselves and don’t think of themselves as different.
“If our goal is to make sure that kids look, feel and function the very best possible, the most intangible of those is how do you help kids to stay engaged in their care and to feel good about themselves?” Rhodes said. “Having any kind of public (attention), whether an actor or movie or books or concerts, all of those things kind of help to normalize what these kids go through.”
Holly Marshall, 14, and her mom, Jean Marshall, also attended the showing. Holly was adopted from Ukraine, and as soon as she was brought home the surgeries began. She’s received 17 surgeries for her cleft lip and cleft palate.
“There’s a lot of bullying, she’s certainly been through a lot of that,” Jean Marshall said.
On top of that and all the medical procedures, Holly’s father passed away in 2016 and so the Mechanicsville family has struggled with that grief, as well.
As they talked about it before the movie, Holly’s mom put her arm around her daughter and gave her a quick squeeze.
Holly said there’s only one way to deal with difficult times: to stay positive, no matter what.
“Be around people that care about you and stay positive about stuff and don’t let bad things get you down,” she said.
Her mom said that’s not too difficult for Holly.
“She’s a pretty happy little girl,” Jean Marshall said.
Heavenli’s life has been dotted with surgeries, as well. She’s had about 15 to 20 since she was born, according to her grandmother, Carolyn Stump. It’s difficult, Heavenli said, especially when combined with people not understanding her situation and making fun of her.
“I’ve been dealing with it all my life,” she said. “When I first started, it was hard, but then I just got used to it.”
It’s been a challenging journey for Stump, too. When Heavenli was first born, Stump didn’t know how she was going to care for her.
“To see her go through any surgery was hard,” Stump said. “Sometimes she’d be in there for 8 to 10 hours, and (I wouldn’t) know the outcome. But Heavenli’s a miracle. She’s truly a miracle.”
Stump said she wishes adults would explain to their children that it’s not nice to make fun of somebody just because they’re different.
“Get to know them, because they have a big heart, you can have fun with them,” she said. “They’re just like you. They’re just different. Everybody’s different.”