Fort Wayne families applaud the film ‘Wonder’ for creating more awareness about children with cranio-facial syndromes
The new film “Wonder” has received good reviews from critics, but it draws raves from at least three Fort Wayne families for creating more awareness about cranio-facial syndromes, rare conditions that affect their children.
“I really hope it will start conversations in families,” said Jeannie Ewing, who with her husband, Ben, are parents of Sarah, 4, who was born with Apert syndrome.
It is an opportunity to teach children about being tolerant and kind, and that children with disabilities like to do a lot of the same things able-bodied children do, said Ewing, who had not seen “Wonder” as of Monday. The film opened locally and nationwide Nov. 17.
The film centers around a boy, Auggie, who experiences bullying when starting fifth grade at a mainstream school and then becomes a hero. Auggie looks different because he was born with Treacher Collins Syndrome, which often results in hearing problems and underdeveloped facial bones, such as a small jaw and chin, the U.S. National Library of Medicine said on its website, https://ghr.nlm.nih.gov/condition/treacher-collins-syndrome.
The Eakright family of Fort Wayne organized a “viewing party” of 40 family members and friends to see “Wonder” this past Saturday because their son, Issiah, 11, was born with Treacher Collins Syndrome.
“I thought it was great,” Jessica Eakright, Issiah’s mom, said of the film.
She especially liked the message of focusing on what the person is like on the inside and not just what he or she looks like on the outside. Eakright also likes the #ChooseKind movement started by the author of the book on which the film is based.
The film wasn’t completely realistic, however, she said, because it only gave you a glimpse of life for a family with a child with a cranio-facial syndrome. Most notably, the movie didn’t touch on any of the medical issues families face, she added.
Issiah, for example, has had six surgeries so far and likely will need more, including surgery to make sure there is room for his airway, Eakright said.
She and her husband, Jarrod, who also have three other children, wrestle with whether certain surgeries are needed and when, she said.
Ewing and Jayme Morrill, whose son, Jayvion, 4, also has Apert Syndrome, have had to make similar decisions about surgeries for their children.
With Apert Syndrome, the skull bones fuse together prematurely, which affects the shape of the child’s head and face, the U.S. National Library of Medicine said on its website, https://ghr.nlm.nih.gov/condition/apert-syndrome.
The child’s fingers and toes also may be fused together at birth, requiring surgery to separate them.
“He’s probably changed my outlook on life,” Morrill said of Jayvion. “To see how much he has been through, and he just keeps going,” usually with a smile, she added.
Cranio-facial syndromes are rare, and Morrill, Ewing and Eakright all said they discovered their child had a cranio-facial syndrome at birth. They each also have additional children who were born without cranio-facial problems.
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So far, the mothers said their children have been spared from the bullying faced by Auggie in “Wonder.”
Sarah and Jayvion both attend a half-day pre-school program at Haley Elementary School for children with disabilities, so everyone in their class looks different, Ewing and Morrill said.
Unlike the older Auggie, Sarah and Jayvion also don’t notice a difference between themselves and able-bodied children, their mothers said.
“She is very innocent,” Ewing said of Sarah. “She goes up to everyone and thinks she is just like them – looks just like them.”
But Ewing has heard some hurtful comments from older children and a few adults.
Issiah has a mild version of Treacher Collins, Eakright said, so the most obvious outward difference is that he wears hearing aids.
Teachers at St. Joseph Central Elementary, where he is in fifth grade, have been very helpful, she said. That includes wearing a microphone that sends their voice directly to Issiah’s hearing aids.
Otherwise, he’s like a lot of other kids his age: He likes to read and play video games. He also sings in the school choir and plays Little League baseball.
As with Ewing, Eakright and Morrill also have encountered situations in public where other children stare or point at their child.
They all would rather answer questions about their child’s cranio-facial syndrome rather than have other parents pull their children away out of embarrassment or concern.
That’s where they think the film “Wonder” can help, by encouraging more conversations with children about people who look different.
Everyone is the same on the inside, Morrill said, and children should treat other youngsters the way they want to be treated.
And they need to know, she added, it’s OK to be friends with someone who looks different.