Far from the white beaches and turquoise waters of the Persian Gulf, a mother stands in a sea of people, arms wrapped around her sons, as a wave of passengers click the handles of their carry-ons, wheeling them toward their destinations.
Saleema Al Shukri has just arrived at Logan Airport from Abu Dhabi.
It has been six long months since she has seen her sons Saeed, 16, and Ahmed, 23, and her husband Fadel, all of whom temporarily relocated to Boston to begin a journey of hope and healing, while Saleema remained at home to care for the rest of the family.
Two years earlier, at the age of 14, Saeed was diagnosed with kidney dysplasia, a condition that results from the malformation of the kidney during fetal development. While Saeed had remained relatively well his entire life, his doctors in Abu Dhabi noticed that his blood levels started to become abnormal, showing his kidneys were beginning to fail.
“We want him to run and fall like any other kid,” says Adreana Duchesne, describing her approach to raising her 4-year-old son Mason. Adreana and her husband Jeremy know that even though their son has complex congenital heart disease, his lifestyle doesn’t need to be limited in any way.
“Mason is super hyperactive! He’s a maniac, he’s fresh; he loves to sing and dance and put on a show. He has a personality the size of Texas.” He also has a scar the length of a ballpoint pen on his chest—the one visual reminder of his three open heart surgeries.
Adreana found out about Mason’s heart condition at her 20-week prenatal ultrasound near the family’s home in western Mass. “We were told to simply go home and grieve—that there was nothing we could do to save our son’s life. But we wouldn’t accept that.”
Adam Pendergrass used to trip and fall dozens of times a day. “Every pair of pants we have has holes in the knees,” says his mother, Dahlia. “But Adam falls really well. He would stand up, shake himself off and say, ‘I’m OK!’”
At preschool, Adam couldn’t sit crisscross on the floor. He walked with a crouched gait, and to climb the stairs, he had to hold the railing and lift one foot at a time. But none of this was a big deal at first. He knew he had something called cerebral palsy, but it was OK. All the kids at preschool wanted to try his braces and have their legs stretched by the teacher like Adam did. One girl devotedly helped him take off his leg braces at nap time. Adam still gave out hugs and narrated long, action-filled adventures that poured out of his imagination.
Adam’s family had been bringing him from Hartford, Conn., to Boston Children’s Hospital’s Cerebral Palsy Clinic since he was 2 and knew the hospital offered a spinal operation known as selective dorsal rhizotomy (SDR). Adam was an ideal candidate: The operation mostly benefits children with cerebral palsy and leg spasticity who can still walk independently, like Adam could.
However, Adam wasn’t mature enough yet to participate in the rigorous physical therapy that would be needed afterward. So instead, he had weekly physical therapy, hippotherapy (adaptive horseback riding), aquatherapy, gymnastics and Tae Kwon Do, plus Botox injections to relax his leg muscles every few months.
Strangers often tell Christine and Bryan that their daughter Murphy has such big, beautiful eyes. What they don’t know is that one of her eyes is not real. “We just want to say, ‘You have no idea!’, but we just smile and say, ‘thank you!’”
When Murphy was five months old, Christine noticed that her daughter’s right pupil looked a bit iridescent. As a neurological nurse, she knew what to do to test a patient’s eyesight: she covered her daughter’s right eye to no effect. But when she covered the left eye, “Murphy lost her mind.”
Christine called her local pediatrician and was seen that afternoon. When a crowd of staff started to gather around Murphy during the exam, Christine knew something was wrong. “I’m a nurse. When there’s an odd diagnosis, everyone wants to observe the patient. I knew from experience that something wasn’t right.”