For some families in the waiting room on the day of the Apert syndrome clinic, it’s a reunion. For others, it’s a revelation. Coming to Boston Children’s Hospital from as far away as China, some have never met another child with Apert syndrome. Before long, parents and kids of all ages and ethnicities are taking group selfies as the younger children run around and play.
“These kids have the brightest smiles, they’re very resilient,” says Tambra Milot, mother of 3-year-old Madilynn.
Each year, the clinic sees about 50 children with Apert syndrome, a rare genetic disorder in which the skull, face, hands and feet develop abnormally. The clinic is held at least twice a month, bringing together the specialists each child needs to see. Today, families are also here for the weekend, to exchange information and learn about the latest research at Boston Children’s 2016 Apert Family Symposium. …
Honoring Craniofacial Acceptance Month and one young man’s quest to give back
By Torrence Chrisman
Torrence Chrisman, 24, is a history major at the University of Massachusetts Boston. At birth, Torrence was diagnosed with Apert syndrome, a rare genetic birth disorder involving abnormal growth of the skull and the face, fingers and toes. Read about his medical journey as a Boston Children’s patient and his quest to return to the hospital.
I came to Boston after being born in Chicago, where I was diagnosed with the amazing Apert syndrome. It was because of the doctors and surgeons at Boston Children’s Hospital that I ended up in Massachusetts. One surgeon, Dr. Joe Upton, specialized in operating on the hands of Apert patients. He swung a home run every time he entered the operating room and worked miracles with microsurgery. Dr. John Mulliken, who specialized in the craniofacial aspects of my surgeries, always had a can-do attitude and completed the surgeries with confidence. …