Photos by Katherine C. Cohen
On an unseasonably warm day in February, the sun shines brightly at Clasky Common Park, a New Bedford town gem with views of the river. Twenty-one-year old Sharieff Hester sports a pair of cherry-red shades and a big smile. He walks confidently around the park, his father and sole caretaker David Hester dutifully following behind, checking in often. “Are you cold son?” he asks. Sharieff answers through his tracheostomy, “I’m fine, Dad.”
David stops to adjust his son’s scarf and offer him a sip of water. “We have a routine every morning. The first thing I do is hug Sharieff and tell him how much I love him. Then I make sure his trach is clean and dry, and we say a prayer together.”
Sharieff has been cared for at Boston Children’s Hospital since his birth in 1994. His main diagnoses are Arthrogryposis, a rare congenital condition characterized by stiff joints and abnormally developed muscles; Klippel-Feil syndrome, a rare birth defect that causes some of the neck vertebrae to fuse together; restrictive lung disease; and pulmonary hypertension.
Though most of his care is now outpatient, Sharieff underwent multiple spinal operations and spent hundreds of days inpatient at Boston Children’s over the years. “He’s mayor of 8 South, governor of 9 South, legislator of 10 South and presidential candidate of 11 South,” laughs David.
Despite being medically fragile, Sharieff has an inner strength that inspires everyone around him. He graduated high school with academic and attendance awards, was crowned “king of New Bedford,” and has a fan base around town, including the mayor himself. Primary care Boston Children’s physician Dr. Clement Bottino says, “Sharieff is one of the sweetest, kindest people I have ever met.”
David is proud of his son and of the life they share together. He admits it was a bumpy road to get where they are today.
When he gained custody of two-year-old Sharieff in 1996, David was living alone in a one-room attic. “There I was with a son with so many medical issues and not enough help. I carried Sharieff on my shoulders everywhere — even onto the train and bus — and I didn’t care what people thought of me. I just didn’t want to ever leave him behind. I was his mother and his father. It was a very, very difficult time for me, but I kept my emotions and feelings to myself.”
Surrounded by the love and support of his mother and 10 siblings, David managed as best he could, but there were setbacks. In 2003, Sharieff’s tracheostomy suddenly came loose. David panicked. “I thought he was going to die. I was pacing back and forth wondering what to do, when Sharieff looked at me and said, ‘Dad, it’s going to be OK.’”
With that reassurance from his son, David was able to calm down and call an ambulance in time to get Sharieff the help he needed.
After that incident, David realized he needed guidance to master the ins and outs of caring for a medically-complex child. He asked to be laid off from his union carpenter job and called on the help of a state social worker. She showed him how to get organized and arranged for a home health aide.
He started to listen carefully to Sharieff’s many specialists, including cardiologist Dr. Mary Mullen, otolaryngologist Dr. David Roberson, orthopedic surgeon Dr. Lawrence Ira Karlin and pulmonologist Dr. Martha Fishman. He asked questions and took notes. “I knew I had to pay attention to everything, because I didn’t ever want to hurt my son. Through that process, I built a relationship with Sharieff that is so beautiful that nothing at all can separate us.”
Today, David continues to center his life on Sharieff’s care — never running low on oxygen, never missing a medication or a doctor’s appointment and always singing his son’s praises. “David is an angel,” says Roberson. “He is calm, collected, very meticulous in his attention to Sharieff’s needs, realistic and just a great guy.”
It’s not easy for David to take a compliment. “You know, at the beginning of this journey, I thought I was taking care of Sharieff,” David says. “But I’ve realized through the years that Sharieff was really taking care of me. He made me a better man.”
Learn more about Complex Care at Boston Children’s Hospital.