Health Family Fall I Winter 2017 - Page 8

M o s t pa r e n t s w i l l g o t o t h e ends of the earth to get their children the help they need. Or in the case of Diana and Jason Johnson, about 4,500 miles — the distance from Anchorage to Providence. Their youngest boy, Daine, kept breaking bones and doctors in Alaska couldn’t figure out why, so they made the trek to Hasbro Children’s Hospital. “We packed up our whole lives,” Diana Johnson says with a smile, “and moved here.” Here is where they found the help they couldn’t find back home. Here is where Daine’s diagnosis of osteogenesis imperfecta — brittle bone disease — was made at Hasbro Children’s Hospital. Here is where the youngster, now seven, gets regular treatment at the hospital through its Tomorrow Fund Clinic. And here is North Providence, where the family of four has lived for five years and shared an apartment loaded with toys, drawings and all the other usual signs of a home livened by children. They also have a ten-year-old boy, Jaidon; the names of the two kids are a blend of their parents’ names. As Diana talks to a reporter, inquisitive Daine sidles up to the guy asking all the questions. He points to the laptop where notes are being taken. “You spelled that word wrong,” he says with no arro- gance, just an eagerness to be helpful, before darting off to play video games with his big brother. “You’d never know what he has by looking at him,” his mother says. “He’s just like any other little boy.” In Alaska, it was about a month after Daine started walking at thirteen months when the trouble began. There was some water on the floor of the bathroom: Daine slipped and broke his leg. “He was in a cast for more than a month,” Diana says. “And when he was out of the cast, he broke his leg again tripping on a kitchen rug.” It was painful watching their child suffer, she says, but it was passed off as bad luck and nothing else. But then it happened again. “Within a month of that second break,” Diana says, “he broke his arm. Taking a nap. We’re not sure if he caught it in his crib, or was laying on it funny, but it broke.” That’s when they started questioning what was wrong. An orthopedic doctor back home told them it couldn’t be brittle bone disease, because it doesn’t run in the family. They were told not to worry about it. The breaks contin- ued — eight in eleven months, seemingly minor slips resulting in major pain. The parents worried they’d be accused of abuse and have their children taken away (though thankfully that never happened). The literal breaking point came within the first year when While there is no clear cure for osteo- genesis imperfecta, the treatments Daine receives at Hasbro Children’s Hospital do help his bones grow stronger. He is now able to enjoy activi- ties like swimming and going for walks with his family. 8     HEALTHY FAMILY l FALL/WINTER 2017