Emily – A sisters story
In Your Own Words My name is Emily. My older brother was born with a cleft lip and palate. If you asked me if that makes him different than any other teenage boy, I’d tell you no.
Mike Kozlowski – A winning style
“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.
Jesse Kristin – College Student
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.
Early endoscopic release of craniosynostosis
The only technique available in the early days of surgical correction of craniosynostosis was the simple release of the fused suture via a large scalp incision. While effective in some children, this method had a high failure rate because the cranial bones would fuse back together before the brain was able to re- create the normal shape of the skull.
Carolyn Macedo – Private Banker
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.
Finally, a Law to Make You Smile
On August 6, Governor Deval Patrick signed a law mandating insurance coverage for treatment of cleft lip and/or palate for children under the age of 18. A ceremonial signing, attended by supporters, was held at the State House on October 1.
Robin Sequence: More Than a Receding Chin
Robin Sequence: More Than a Receding Chin By John Mulliken, MD, Director, Craniofacial Centre, Boston Children’s Hospital Children born with Robin sequence (named for an early 20th century French physician; pronounced row-BAN) have a lower jaw that is smaller than normal (micrognathia) or set back from the upper jaw (retrognathia).
Cheri Scott – Advocate
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.
Handling Teasing and Making Friends
We all have differences. Our looks or how we speak or act can make other people curious about us and may lead to teasing and bullying. Children and teens with facial differences can sometimes feel left out or put down through no fault of their own. Preparing for attention and questions from classmates, strangers, or others can help build confidence in social situations.
Betsy Wilson – Educator and Child Life Specialist
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.