“We Break From Head to Toe”

Many of us don't leave our childhood years with breaking a bone or two in fall or mishap.

Kristi Walden has broken 480 bones in 28 years.

Walden has Osteogenesis Imperfecta, a brittle bone disease that has no cure.

“As of now, there is no cure,” Walden said. “It's a mutation of the genes. It's kind of like having osteoporosis a lot younger – and a lot worse. ”

Her first bone breaks happened while she was still in the womb.

Wishbone Day, an awareness day about osteogenesis imperfecta, is May 6. Wishbone Day kicks off Wishbone Week.

Walden is trying to create a local Wishbone Day in this area, to help people know about the disease that she and her son Kyler have.

“It's something totally different than spina bifida,” Walden said. “I want people to know more about it, in case someone else comes along, so they're not totally confused and scared.”

She said the disease is rare and many people don't know anything about it.

“Kyler has Type 4 and I have Type 3 Severe,” Walden said. “I have them most severe type before death. There are rare cases and we're all kind of spaced out over the region. As far as I know, there's only me and Kyler and maybe two other people that live in the entire Upstate that has it.”

Walden said that breaking “happens easy.”

“We can sneeze and break,” she said. “We can cough and break. It just depends on what position we're in and what happens.

“When I was a baby, I rolled over on a baby bottle and automatically broke my arm,” Walden said. “I've sat down in a chair wrong and broke my leg. It's not really something that you can really take precautions on, because it's going to happen. We break pretty much from head to toe.”

“I've had a skull fracture, I've fractured my spine,” she continued. “Every bone you can think of, I've broke it.”

Kyler is four years old and has had nine breaks since birth.

“Every OI child are called snowflakes, because they're so fragile,” Walden said. “Kyler doesn't break as easy – thank goodness.”

She thinks that's because he watches how she moves and maneuvers.

Kyler just started school. Walden said that many of the teacher is his school remember when Walden herself was in school, but some are unaware of OI.

“When you bring them up to him and you're like, “Okay, he breaks,' they're like, 'Uh, what?'” Walden said.

Some of Kyler's teachers gave her the idea to create a Wishbone day here.

“Some people think we're little dwarfs,” Walden said.

Walden walked until she began middle school.

“After I hit middle school, I was too short,” she said. “It was kind of hard to see me when everybody was changing classes. I got hit by bookbags. So I've went to a wheelchair and I've pretty much been in one every since.”

When Kristi was growing up, ignorance of OI led people to accuse her mother, Brenda Shedd, of abusing her.

Hospital staff reported her to authorities after her Kristi's doctor to sent her to X-ray. The doctor didn't explain the situation to staff before he went to lunch.

“When they saw all the broken bones that she had due to me carrying her that was already healed when I had her, and the four broken bones she had then, they got me for child abuse,” Shedd said.

Luckily, Walden's doctor came back from lunch and wanted to know where Walden and her parents were and was able to step in.

Walden believes she was on the first OI patients in Pickens County, which led to some problems when she and her mother moved here – and her medical records were slow to arrive.

Authorities stepped in when Walden broke her leg soon after moving to Easley.

“I told them, 'she has the OI,'” Shedd said. “Well, nobody down here knew anything about it.”

Shedd spent a couple of hours in jail here until her father was able to contact doctors at Duke and get the situation straightened out.

“Getting people to learn and listen to you, they think you're crazy because it's like, 'We've never heard of it,'” Shedd said.

Walden said many doctors don't understand the disease still.

“They don't understand that pain medicine for a regular individual has no effect on us,” she said. “Because we've been on it so long when we're little, we've got a tolerance for it. They look at you like, 'This isn't knocking you out?'”

Shedd said doctors and nurses are often surprised by Walden's lack of reaction to a broken bone.

“She's not crying, she's not screaming, because after 480 broke bones, you get used to it,” Shedd said. “They think she's coming in just to get drugs.”

Kristi and Kyler's doctors encouraged her to explore the disease further. To strengthen his bones, Kyler now receives an IV infusion every few months – a four and a half hour procedure.

“It's pretty much like an energy drink,” Walden said. “He doesn't hurt. All of the old fractures that used to have pain, it doesn't hurt as bad. You can tell when the dosage is wearing off – he gets whiny, he gets cranky, he doesn't feel good. The day of the dose, he's like Superman again.”

She knows there are more broken bones in Kyler's future.

“A lot of OI parents try to keep their kids from doing stuff,” Walden said. “They don't want them to break. I'm not going to hold him back. If he wants to do it, he's going to do it.”

Walden herself was a cheerleader for her high school.

“I did not slow down,” she said. “If the other kids did it, I did it. I found a way to do it.”

She hopes more awareness about OI and Wishbone Day will lead to fundraisers to help OI patients purchase ramps and to adapt homes to make life easier.

The disease creates a financial burden with the equipment OI patients require. For instance, Kyler needs a special toilet for potty training.

“Every year, right when he gets good, there's another break and he has to go back into diapers,” Walden said. “You need a car seat when you're in a cast, a car seat when you're not in a cast. There's like four different types of car seats.”

“For the legs, for the arms, for the body,” Shedd added.

“It's financially crazy,” Walden said, but she added that she's happy than today's OI patients have equipment that didn't exist when she was younger.

For more about Wishbone Day, visit http://www.wishboneday.com/