Jessica Lewsley’s annual follow-up appointment with her orthopedic surgeon Dr. Peter Waters is a fairly routine affair—x-rays and strength and function testing. Jessica was born with a birth defect to her left hand, which developed only a thumb and little finger. “Dr. Waters always shares little pearls of wisdom, and we all look forward to our visit every year,” says Jessica’s father Mike.
“It will move you to tears,” says Waters. “Rather than focusing on what is missing, Jessica and her family have been great about celebrating all that she can do. Their acceptance, love and support has had a major impact on her life.”
During high school, I was embarrassed to discuss my disease. Very few of my teachers and friends knew I had Crohn’s. I was afraid I wouldn’t be able to manage school assignments, participate in athletics and still have a social life.
Monday through Saturday, Kyle Cooper wakes up at 5:40 in the morning to get to his construction job by 7:00. On his only day off, he shoots trap at the local sportsman’s club with his grandfather. Things that would bother a typical teen—a long commute, arduous work, little time off for friends—barely faze Kyle. This 18-year-old has the quiet confidence and patience of someone twice his age.
Kyle’s demeanor may be due in part to having had to wait a lifetime for something he wanted so badly. He was born with hemifacial microsomia (HFM), a craniofacial anomaly that resulted in the left side of his face being underdeveloped. The cause of HFM is not well understood. Until this past February, what HFM meant for Kyle was that his face was noticeably uneven and barely any of his teeth touched. “I made it through and got used to it, but I couldn’t eat things like meat because it would take me three hours to chew.”
“People would say ‘I feel bad for her’…I’m the same person I ever was, but better, stronger,” says 14-year-old Shannon Curley, reflecting on the time she spent in isolation treatment at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center. “I wouldn’t change anything. I’ve met so many amazing people and learned some important things.”
In December 2012, Shannon, a middle school basketball star and Billerica native, was diagnosed with acute bilineal leukemia. Due to the rarity and nature of her leukemia, doctors recommended an aggressive treatment plan. After three months of treatment, Shannon received a lifesaving bone marrow transplant and was put on a recovery plan that included a year in isolation to build up her immune system.
“After she got out of the hospital, Shannon had to go into a year of outpatient isolation treatment. Her immune system had been suppressed so her body would not reject the bone marrow, and that made her susceptible to infection,” explains Shannon’s mother, Carol Curley. “Although we were at Dana-Farber regularly, we’re lucky that she could go through isolation treatment at home and that she was able to make friends on the isolation floor during her visits to Dana-Farber.”
While in confinement Shannon kept a positive attitude and even offered support to other patients.