“A facial deformity, or any deformity, does not prevent success,” says Mike. “The challenges associated with being different cultivate many positive characteristics, including endurance, courage, and leadership.” Mike, who has had 14 corrective procedures at Children’s Hospital Boston, believes the challenges associated with having cleft lip and palate have helped him develop valuable skills that have benefited him at MIT and throughout his life.
Two weeks before the birth of Rob and Eva Higby’s son Brayden, a prenatal ultrasound scan revealed that he had a bilateral cleft lip. The first-time parents began searching for a surgical specialist, and with the help of Eva’s brother and sister-in-law, whose child also had a cleft lip, found Dr.Mulliken and his team at Children’s Hospital Boston. In November, when he was four and a half months old, Brayden had his lip repaired and nose reshaped.
Jesse Kristin has had more than his share—10 facial operations, extensive orthodontic work and, as a child, not knowing how to respond when other kids asked about his cleft lip/palate. But at age 19, Kristin spends little time thinking about the past. He is busy attending George Washington University in Washington, D.C., where he majors in biology and, when possible, performs with The Sunday Mail, a piano-based rock band for which he plays drums.
Born with Hemifacial Microsomia with Microtia, Lauren Dausch from Sharon, Mass., was a 2012 recipient of FFC’s Jane C. McDaid Scholarship Award. This summer she will be working at Camp Starfish in New Hampshire, a sleep-away camp in for kids with emotional, behavioral, and developmental issues and disorders. Her dream career is to counsel children and teens as a social worker.
Carolyn Macedo recalls the awful feeling in the pit of her stomach. She had never heard the word craniosynostosis when her daughter, Nicole, was diagnosed with it. But she soon understood what it meant. The craniofacial condition causes a baby’s head to develop abnormally due to the premature closing of the seams between the bones.
We’ll never forget when the doctor came into our hospital room on Christmas Eve day, only eight hours after our daughter was born, and said, “We’re taking Madison to have her head X-rayed because of the indentation on the left side. It may be a fracture that happened while she was going through the birth canal.”
When a child is born in Alaska with a craniofacial condition, there is a good chance the family will become acquainted with the Foundation for Faces of Children. That is the goal of Cheri Scott, one of the founders of Stone Soup Group, an organization based in Anchorage that assists families who care for children with special health care needs.
Only few people understand facial disfigurement. Betsy Wilson set out to change that through her support and information network, Let’s Face It (www.faceit.org), which provides a broad range of resources for individuals whose faces are disfigured for any reason—burns, cancer, accidents or craniofacial conditions—and those who care for them. The Foundation for Faces of Children is one of those resources.
Many families make their first contact with the Foundation for Faces of Children via email. When they happen to be Spanish-speaking, Maria Carmen Thompson gets involved. The Mexico native spoke no English when she arrived in the U.S. in 1989. Since becoming fluent, she has used her bilingualism in corporate and educational settings. But Thompson regards her volunteer role as Spanish translator for the Foundation as special.
While in some ways it is difficult to quantify the effect that this has had on my life, upon reflection, it has shaped me in subtle but important ways. The most profound impact has probably been in developing empathy for others. Often times I would sit in a waiting room at Boston Children’s Hospital and look around to see other children with conditions far more severe than mine. After my own experience, it is difficult not to have a deep appreciation for the hardships they have had to endure.As a result, I have tried to be more compassionate of those around me and to understand the path that they have traveled.
