Parents from Utah and surrounding states gathered at Shriner's Hospital today to find out the latest on how to stop the bones in their kids from falling apart.
Science Specialist Ed Yeates reports the disease, called Osteogenesis Imperfecta may afflict as many as 50-thousand in this country, and parents often don't even know it's happening.
Four-year-old Dayne Nourse sheds some tears here for good reason. Doctors implanted metal shafts in the bones of his arms between the shoulder and the elbow.
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JACQUES D'ASTROUS, M.D., PEDIATRIC ORTHOPAEDICS: "WE ACTUALLY CUT THE BONE IN TWO OR THREE PIECES AND PUT A ROD DOWN THE HOLLOW PART OF THE BONE TO STRENGTHEN THE BONE AND PREVENT THE REOCCURRENCE OF FRACTURES."
While you may not know Dayne, you can't help recognize his dad, KSL's own Dick Nourse.
Dick and Debbie didn't know their son had what is called Osteogenesis Imperfecta. Niether did doctors at first until they did a full skeletal survey.
DEBBIE NOURSE: "AT THAT TIME WE WERE ONLY AWARE OF ONE FRACTURE. AND AFTER THEY DID THE FULL SKELETAL SURVEY, THEY HAD SHOWN - HE HAD APPROXIMATELY SEVEN FRACTURES - AND WE HADN'T EVEN KNOWN OF THEM."
And that's true of many parents who come to this one-of-its kind clinics at Shriners Hospital.
Collagen which provides the scaffolding for bones is genetically missing in these kids. Without it, bones fracture or break at almost the drop of a hat.
DICK NOURSE: "MAYBE JUST PICKING HIM UP WHEN HE WAS SMALL OR A BABY - THE RIB CAGE - HAD FRACTURED A COUPLE OF RIBS."
DR. D'ASTOUS: "OR IF THEY SLIP, THEY CAN BREAK THEIR LEGS QUITE EASILY - OR IF THE PARENT TRIES TO HOLD THEM UP BY THE ARM THEY CAN BREAK THE ARM QUITE EASILY TOO."
Fortunately Dayne has a milder version of the disease. Other kids in this clinic are not so lucky.
In fact, in the more serious form of O.I., children may be still born at birth or die later from what would normally be a minor fall.
At first, Dick and Debbie didn't know where the dice had fallen with their son.
DICK NOURSE: "I THINK WE'RE BOTH VERY OPTIMISTIC RIGHT NOW. WE WANTED TO BE FROM THE BEGINNING - BUT IT WAS TOUGH."
The best news ever? When doctors said Dayne will probably outgrow his fractures.
Dayne is also taking an experimental drug which may dramatically reduce the risk of fractures until he outgrows them.
Shriners Hospital is part of a North American multi-study group now clinically testing the injections in kids with O.I.
