Crawford misses school several times a month to travel from his home in Sylacauga, Ala., for appointments with various medical specialists at the University of Alabama at Birmingham. He was born at UAB Hospital in 1999 with an unspecified craniofacial disorder that kept him hospitalized for the first six months of his life.
“When I was little I didn’t have nose holes,” Crawford says, referring to his sinus passages. He’s now had more than 30 surgeries in his 12 years to reconstruct the bones in his face.
UAB is well known throughout the country and the world for its constellation of expert physicians and scientists, and Crawford has come to know several, from geneticists to oral-maxillofacial surgeons to world-class nursing care, who have become like family. But, the toughest part of his ordeal comes from trying to fit in with other kids, says his mom Lisa Crawford.
Earlier this year, she wrote on UAB’s Facebook, asking for help in raising awareness about kids like her son who live with craniofacial disorders. “Read (about a) little boy who struggles through life,” she wrote.
“Look inside their heart, not their face,” she said recently. She wants to start a support group in Alabama for families affected by craniofacial disorders. “Support helps spread awareness. Everybody should know more about these disorders and understand why those who have them look different,” she says.
Joshua Klapow, Ph.D., UAB clinical psychologist, says a social support network, which can include a local support group, is key to helping children with physical disorders cope with mistreatment.
“A child with a disfigurement has to endure stares, avoidance and awkward questions on a regular basis. Throw bullying on top of that and the pressure and psychological scarring can be almost unfathomable,” Klapow says.
“Strong relationships with the people around them who will stand-up for them, protect them and — most important — normalize their existence will aid them psychologically,” Klapow says.
“It allows families to discuss the challenges of having a child with this condition with others worldwide and find out how those cases are being treated,” Robin says.
Because Crawford’s condition is genetic, his sister Mary, two years his senior, was tested leading to the discovery that she also had a craniofacial disorder.
“Crawford shows similarities to a well-known genetic condition called Treacher-Collins syndrome, but not completely,” says Robin. Lisa Crawford also shows similar signs, Robin says.
Even Crawford’s surgery, while aimed at making him physically whole, also addresses his social needs.
Peter Waite, M.D., D.D.S., chair of the UAB Division of Oral and Maxillofacial Surgery, has performed several of Crawford’s surgeries since 2005. His goal, he says, is to completely reconstruct his face. “The objective is a functional outcome — the ability to breath, chew and speak and pronounce words — but one benefit will be cosmetic and enhance his psychosocial well-being,” Waite says.
Crawford, game player in hand, says despite the bullying he doesn’t feel different; people with craniofacial disorders are like everyone else.
Contact Lisa Crawford about starting an Alabama support group for craniofacial disorders at email@example.com. For more information about craniofacial disorders, contact the UAB Cleft & Craniofacial Center at Children’s of Alabama at 205-939-9369.
For patient information, go to www.uabmedicine.org.