Cleft And Craniofacial Patients Treated To Movie Screening

December 01, 2017
wonder

The power of play at Joe DiMaggio Children’s Hospital takes many forms when it comes to caring for pediatric patients and their families. For more than 100 patients from the pediatric hospital’s Cleft and Craniofacial Center, it recently took the form of a red carpet screening of the new movie “Wonder” just a day prior to Thanksgiving.

"Wonder" is based off of a New York Times best-selling book detailing the story of August Pullman, a boy born with a genetic condition known as Treacher Collins Syndrome. The syndrome affects bone and tissue development in the face, and some with the condition are born with an opening in the roof of the mouth called cleft palate.

The Cleft and Craniofacial Center at Joe DiMaggio Children’s Hospital is accredited by the State of Florida Department of Health and the American Cleft Palate-Craniofacial Association to provide optimal care and improve the quality of life for patients and families of children with facial differences.  It is led by a 16-member multidisciplinary team of physicians, surgeons, nurses and therapists that provide specialized services including speech therapy, child psychology, plastic surgery, pediatrics, genetics, otolaryngology, audiology and more.

The Craniofacial Center patients, along with their families, received free admission as well as snacks during the screening while they donned a special t-shirt provided featuring the cover of the book.

“We were very excited to join all the families of the center,” said Kerri Burns, mom of 15 year old Ellie Burns. Ellie was diagnosed with Treacher Collins Syndrome at eight months old. “My daughter Ellie describes herself as unique and random. She is so spunky. I hope that when people see the movie their takeaway is just how easy it is to be kind rather than make the concerted effort to be mean or stare. It takes work to harbor negative emotions, but easy to be kind.”

For Elsie Urbay, mom of 15-year-old Randy who has Apert Syndome, the experience brought more than just a story to life. 

“Being together to experience something we can relate to not only brings the book to life but it offers so much more for parents and children alike in that it reminds us we are not alone,” said Urbay.

The screening was made possible through fundraising efforts of a parent steering committee and the center’s Family Advocate, Ann Lindahl. Plans for the project starting evolving the minute it was announced producers were making the book, ‘Wonder’ into a movie.

“We started brainstorming about how great it would be to bring the children and families who attend our cleft and craniofacial clinic together to watch a movie that depicts what it’s like to have a child with a facial difference.”  

The plans and funds came together within the year-and-a-half the move was in production.

“This movie event and our other events throughout the year offer our families a safe place where no one stares or asks questions because we bring together children and families who are dealing with similar issues,” said Margaret Grell, Pediatrician and Team Leader at the Cleft and Craniofacial Center. Additionally, it brings awareness to the general population, which may help them to be more sensitive of people who may look a little different but are beautiful people.”