Osteogenesis Imperfecta (OI) or brittle bone disease is an extremely rare genetic disorder that impairs the body’s ability to make strong bones. The disorder can be passed on by a parent or occur through a spontaneous mutation. The severity of the condition varies. In fact, some people are born with OI but don’t know they have it, while for the others the condition is almost always fatal.
According to the American Academy of Orthopedic Surgeons, approximately 20,000 to 50,000 people in the United States have the condition. Unfortunately, sometimes when parents receive the news that their unborn child may have the disorder, they consider abortion.
Chloe Dale was born with OI weighing just 3 lbs 10 oz and was delivered two months early. Her birth was miraculous not only because she has OI but because her mother has it as well. Chloe’s mother was told that the force of delivery was life threatening; however, she refused abortion and earlier this week Chloe turned 15-years-old.
WECT News reports that Chloe was born with several broken bones and had to be carried on a pillow until she was strong enough to be handled. She and her mother have the second most severe form of the disorder, which is known as Type III. The disorder is characterized by a short stature, a blue/gray eye tint, poor muscle development, and spinal curvature. Unfortunately, Chloe did not start sitting up on her own until she was two; and at four-years-old, she had an experimental surgery in Canada that placed rods in her legs to help straighten out her body.
Then in 2009, Chloe hit a growth spurt and the strain on the rods broke her bones apart. Doctors had to replace the rods with new ones that would grow with her as she gets older.
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Despite her fragile frame, Chloe has a fierce independent spirit. She fully intends to enroll in public school next year and often refuses to ask for help around the house. When she does break a bone, there’s no longer a rush to the doctor’s office. X-rays will only weaken her bones more. Instead, she has learned to stabilize her injuries and manage her pain.
“There’s really no point,” Chloe said. “I can take care of myself as good as any doctor.” There is no cure for OI, but there are techniques to help cope. She exercises regularly to keep her muscles, although currently on a break, after ringing in “15” with three broken ribs.
“It feels like my back is turning inside out and its twisting,” Chloe explained. “There’s nothing I can do to help that.” Her back is now bent in at 90 degrees and to the side at 40 degrees. She’s getting ready for another surgery to remove vertebrae that’s been crushed from the curvature.
Any procedures require an extensive search for the right medical provider. Chloe says few doctors are aware of the condition and even fewer know how to treat it. It’s her hope and birthday wish that awareness will spread about OI to encourage research and public interest.
Chloe says on the rare occasion she is able to meet someone else with OI, their bond is instant and unbreakable. While science tries to catch up with demands of her condition, at least for now, Chloe is just going to enjoy being 15. She’s not interested in living a fragile life and while her condition may break her bones it hasn’t come close to touching her spirit.
Learn more about this remarkable teenager in the video below!
