The Catalyst Issue 19 | August 2014 | Page 24

COMMITMENT | to patients and the future legs were broken, and the bones of his skull were soft and unformed, leaving his brain vulnerable to injury. After Trevor first came home, Scott & White doctors would visit the Goehls’ home in College Station to treat him. “They didn’t hold out much hope. But then a week went by and then two weeks,” Mr. Goehl says. “And then they said, ‘You know, we really don’t know what’s going to happen.’” Trevor says that on some level he must have understood what was going on. “My feeling is I must have overheard that,” he says. “I’m the kind of personality that says, ‘I’ll show you!’” Because he was so fragile, the Goehls carried Trevor around on a pillow until he was two years old. One day, while standing up in his crib, he sneezed and broke both of his arms. As Trevor got older, he began having surgeries to repair additional bone breaks. Dr. Brindley remembers the Goehls’ many visits to see him. “He went through several surgeries, including the Sofield osteotomy,” recalls Dr. Brindley. “You take the bone where it’s all gnarled up and cut it into pieces and thread it on a wire to straighten it out. Trevor had that done to his tibia.” The Goehls measure the years by the location of Trevor’s casts in holiday photos. A breakthrough at last Over the years, the Goehls constantly sought new information about OI to help their son. When Trevor was 10 years old, there was a treatment 24 THE CATALYST August 14 | sw.org breakthrough for children with osteogenesis imperfecta. Doctors were using the cancer drug pamidronate to increase bone density, a known side effect of the drug. The results were so striking that the Goehls learned about it at the yearly osteogenesis imperfecta conference they attended. When they got back to Temple, they “ y doctors are so M supportive of what works for me. Because of Scott & White, I drive a truck, I work, I work out, and I can be independent.” —Trevor Goehl mentioned the results to Dr. Brindley, who quickly connected the Goehls with an endocrinologist at Scott & White who could help administer the treatment. “Once we started Trevor on that medicine, the breaks stopped and Trevor started growing. That is a huge thing that Scott & White did for us,” says Mr. Goehl. Now, children with osteogenesis imperfecta start taking the medication as early as six months of age, and many are able to walk later in life. Other than a few small fractures, the fact that Trevor hasn’t broken a bone in the 13 years since the medication took effect is remarkable, because he has certainly tried some things that could land even a healthyboned individual in the emergency room, like flipping a four-wheeler and running his wheelchair off a curb at maximum speed. But these experiences were part of Trevor’s learning to be as independent as possible, something he values above most other things in life. He drives a Dodge Ram with pedal exte