Health Family Fall I Winter 2017 - Page 9

“ It takes a special family to raise a child with OI, letting them be a kid, but in a manner that is safe,” Eberson says. “Daine is a great kid, and his spirit is what keeps him and his family going. Daine broke a leg again. Diana’s sister, Rachel Waldrop, was living in Rhode Island, working at the time as a nurse, and knew of Hasbro Children’s Hospital’s reputation. “She said, ‘You have to come here’,” Diana says. “All his troubles started right after his first birthday. By his second, we were in Providence.” Not long after they moved, Daine snapped his leg stepping on a wayward magnet on the floor. At Hasbro Children’s Hospital, it didn’t take long to figure out what was wrong, Diana says, thanks to a staff led by people like Dr. Chanika Phornphutkul, director of human ge- netics, and Dr. Craig P. Eberson, chief of the division of pediatric orthopedics. To do a complete assessment, the medical team had to wait until Daine was out of his cast. When the family met with Phornphutkul, the doctor knew he had the disease, Diana says, by the boy’s slightly larger head, protruding ribcage and blue sclera in his eyes. He immediately started treatment for osteogenesis imperfecta. “It’s not a common disease,” Phornphutkul says of a malady with an estimated 20,000–50,000 cases in the United States according to the Osteogenesis Imperfecta Foundation. “We have diagnosed a couple of cases a year here, in a state with a birth rate of 10,000 a year.” Daine’s treatment means an infusion of the drug pami- dronate, a bisphosphonate which is most commonly used to treat osteoporosis. He gets his dose every six weeks, a procedure that lasts six to eight hours each time. “The infusion blocks bone resorption and has been shown in some studies to decrease pain and increase bone density in kids with OI,” Eberson says. “They usually ” continue through puberty, but that can change depend- ing on the child’s response to the treatment.” It’s important to note, he says, that “it does not cure the disease but tips the balance on the bone formation/ bone resorption cycle all bones go through … It is the collagen that is abnormal in the bones, not the miner- als like calcium, so this is an indirect way to make the bone stronger.” Wit hout question, the support of family is essential in treating any child, and that support is abundant in the Johnson family, including Daine’s older brother, Jaidon. “Any time he slips,” Jaidon adds, “I want to be there to catch him.” “It takes a special family to raise a child with OI, let- ting them be a kid, but in a manner that is safe,” Eberson says. “Daine is a great kid, and his spirit is what keeps him and his family going.” “I’ve done this long enough to know a key to treatment is family commitment,” says Phornphutkul. “This is a family that uprooted to find an answer for their child. And his attitude is so positive – and that comes from the parents, and that translates into a healthy child in terms of response and behavior.” She says the Johnson family is also a troop that, “makes our lives happy.” “It’s truly like having another family there,” Diana says of the staff at Hasbro Children’s Hospital. “All of them, they’re out of this world.” n Paul Kandarian is a freelance writer based in Massachusetts. Contact him at pkandarian@aol.com. HEALTHY FAMILY l FALL/WINTER 2017     9