By kindergarten, Ashley Jones had broken 100 bones.
That’s when she and her family stopped counting.
Sometimes Ashley’s bones break because of a collision — one time a hammer fell on her head and fractured her skull — but other times they break over seemingly nothing.
She’s broken ribs by coughing too hard. Bones can break if she rolls over the wrong way in her sleep or because she’s going through a growth spurt.
It’s easier to say what she hasn’t broken, she jokes, listing her jaw, nose, and back.
Ashley, an eighth grader at Fishers Junior High, lives with osteogenesis imperfecta, a rare genetic disorder affecting her body’s collagen, causing fragile bones — bones that have been breaking her entire life, bones that continue to break.
A couple weeks ago, she recovered from two broken arms. Her mom, Janna, said it was frustrating, talking in a way that other mothers might talk about gum stuck in their child’s hair.
That said, just because Ashley’s bones are fragile doesn’t mean it hurts less to break them. Ashley said she has a high pain tolerance and doesn’t cry as often now, but, yeah, it hurts. Badly. Even when her bones aren’t snapping, she has chronic pain.
But that has also become an unexpected source of inspiration. So much so, that Ashley turned it into her eighth-grade science fair project — one that has caught attention.
The idea struck when a family friend explained to Ashely that her baby wore a Baltic amber necklace as a natural cure for teething pain. Ashley thought to herself: “Could that help people with osteogenesis imperfecta?”
Turns out it was a pretty bright idea. She’ll be competing in the science division of the 2017 Genius Olympiad, an international multisubject project competition, on June 14 at the State University of New York at Oswago.
Trifold poster girl
No, Ashley didn’t discover a cure for osteogenesis imperfecta pain in her eighth-grade science fair project. But she didn’t need to in order to make an impact.
First, she pulled together 17 participants with the genetic disorder. Considering there are only about 20,000 cases in the United States, according to the OI Foundation, that in itself is a feat. Ashley said she reached out to people she met through online groups or at events for people with the disorder.
She gave some participants a Baltic amber bracelet and created a control group with a similar-looking fake. Participants logged their pain on a 10-point scale for one week with no bracelet, then one week wearing a bracelet.
Those wearing the Baltic amber had a 5 percent reduction in pain, Ashley said, but those wearing the fake bracelet had a 3 percent reduction in pain. Ultimately, she concluded it was not a significant enough difference to prove Baltic amber helped.
In the process, and largely without realizing it, she’s been raising awareness about osteogenesis imperfecta, introducing everyone who stopped by her trifold poster board to a disorder they otherwise would never encounter.
She’s not afraid to talk about her disease and makes it easy to ask what are surely questions she’s heard too many times before.
Osteogenesis imperfecta, what exactly is that? Well, she’ll tell you, it’s her normal.
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