TMC PULSE

t m c » p u l s e | o c t o b e r 2 0 1 6 13 A ndersson Dyke was born on Dec. 22, 2000, weighing three pounds and 11 ounces. She had her mother's bright blue eyes and a wisp of blonde hair. Andersson cried and cooed like the other newborns in the neonatal intensive care unit at Texas Children's Hospital, but there was something different about her. Unlike the other babies, her bones were as fragile as glass. When Andersson was just a month old, her mother, Sarah, brought her to the pediatrician for a routine checkup. The pediatrician lifted Andersson onto the examination table and began checking her heart, lungs, eyes and ears. Everything looked normal. He held up her legs to check her hips and make sure there were no problems in her joints. And that's when he felt it: He had broken her femur. Flummoxed by the sudden and unexpected break, the doctor ordered a magnetic resonance imaging scan to examine Andersson's thighbone. She needed an intravenous line first, but when the nurse fastened the blue tourniquet around her upper arm, Andersson's humerus—the long bone that runs from the shoulder to the elbow—snapped. "After moving her and doing all of that to get an MRI, she came out with almost all of her long bones broken," Sarah said. Doctors soon diagnosed Andersson with a unique case of osteogenesis imperfecta (OI), a lifelong disorder more commonly known as brittle bone disease. The condition is caused by a muta- tion in a gene that affects bone formation and strength. While healthy bones are made of dense living tissue that is constantly being broken down and regrown, Andersson's bones have low density and are prone to fracturing. In search of answers, the Dyke family turned to a group of doc- tors in the Texas Medical Center dedicated to studying the full gamut of bone diseases and translating scientific research into bone-saving therapies. "By understanding and knowing all the different mutations that can affect bones and then developing targeted therapies, we can much more rapidly and more powerfully treat the conditions," said Brendan H. Lee, M.D., Ph.D., Baylor College of Medicine human and molecular geneticist and co-director of the Rolanette and Berdon Lawrence Bone Disease Program of Texas. The team of doctors who treated Andersson, including Lee, prescribed her bisphosphonate drugs, which are clinically proven to prevent bone loss. "It worked," Lee said, "but it wasn't a cure." Getting married The Rolanette and Berdon Lawrence Bone Disease Program of Texas began with one man's visit to the doctor nearly 15 years ago. Retired tank barge magnate and philanthropist Berdon Lawrence met with endocrinologist Robert Gagel, M.D., head of internal medicine at The University of Texas MD Anderson Cancer Center, for a spinal problem his internist noticed on a routine chest X-ray. Lawrence had a long family history of severe osteoporosis, which occurs when the creation of new bone in the body cannot keep up with the dissolution of old bone. The condition causes porous and brittle bones that can break from even the slightest movements, including sneezing or coughing. When Lawrence was diagnosed with severe osteoporosis, he was surprised to learn that there was no concerted effort to study bone disease across Texas Medical Center institutions. By Lawrence's second visit to Gagel's office, the two men agreed that the lack of bone research and treatment in Houston was a serious detriment not only to the growing number of baby boomers entering peak osteoporosis age, but to other patients, like Andersson, who suffer from lesser known bone diseases. Lawrence and Gagel wondered if there was a way to sidestep the competition between TMC institutions and develop, instead, a collaboration. They approached Baylor College of Medicine, where Gagel had been a faculty member in the division of endocrinology. Our goal is to take a situation in which people lose bone, and reverse it. — ROBERT GAGEL, M.D. Head of Internal Medicine at The University of Texas MD Anderson Cancer Center Sarah and Andersson Dyke, 15, read Missy, a book Andersson wrote about a homeless lion cub who is rescued by a family in Springfield, Ill. Published in 2014, the book is sold through the Osteogenesis Imperfecta Foundation and has helped raise close to $20,000 to support research, treatment and awareness of brittle bone disease.

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