Patient Story: Daine

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Most parents will go to the 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, Alaska, to Providence, Rhode Island.

Their youngest son, Daine, suffered multiple bone fractures—nine by the time their little boy turned two years old. Doctors in Alaska couldn’t figure out what was wrong.

Diana’s sister, a medical assistant in Rhode Island, suggested that they come to Hasbro Children’s Hospital for the expertise of our physicians. After doing some research the Johnsons made a bold decision and moved across the country to find the help they couldn’t get back home. At Hasbro Children’s, Daine was diagnosed with osteogenesis imperfecta (OI), or brittle bone disease.

While there is no cure for OI, an infusion every six weeks of a drug most commonly used to treat osteoporosis is helping strengthen Daine’s bones. Despite some restrictions on physical activities at school and with friends, he is able to enjoy things like swimming and going for walks.

“Daine’s treatment as an adult is still unknown at this point. We’re hoping it will be a daily pill. But my biggest concern is finding doctors who will be as wonderful as those at Hasbro Children’s Hospital. They’re truly like having another family,” says Diana.

Her concern about Daine transitioning from pediatric care to adult care is shared by thousands of other parents whose children have chronic illnesses such as asthma, diabetes, and congenital heart disease.

“We never felt judged at CADD; we only felt welcomed,” says Bethany, Duncan’s mother. “Had we known how good the program is, we would have enrolled Duncan sooner.”

“We are teaching Daine to be his own advocate even at this young age,” says his mom. “But it would be such a relief to know there was a program to help us all navigate the transition to adulthood down the road.”