Today, me and mine wear yellow.
Ah Wishbone. (no not the adorable literate puppy. Sidenote, let’s bring that show back. That was way better than Dino Dan. ) But Wishbone. The bone you break while making a wish. For those like my friend Tanya and her son James that wish is “I wish my bones wouldn’t break.”
Osteogenesis Imperfecta, OI is also called Brittle Bone disease and today is Wishbone Day. Today we wish for more awareness of this disease, we wish for more research and better treatments and most of all we wish for a cure. That those whose bones break so easily, won’t.
As our babies learn to walk we all worry, we panic when they fall. They might scrape a knee or bump a forehead. Depending on the type of OI, learning to walk can be a treacherous endeavor. A fall can mean a broken arm. A stumble, a broken leg. Sometimes..simply SITTING can cause a break.
Sweet Baby James first broke his right tibia at 13 months old, while sitting and playing in his playpen. His shin bone just broke. Like that. Can you imagine? His second leg break was 8 weeks later while playing in that same playpen. The next break was in February when he slipped on a small puddle of water on the kitchen floor. The water brought in from their snow boots.
James now wears braces on both his legs to both prevent future breaks and also prevent his bones from bowing as he grows. Every four months he goes to the hospital for Pamidronate, a three day IV infusion that draws calcium from the blood and infuses it to the bones. My friend, James’ mother Tanya who has had more than 100 fractures, you read that right one hundred fracture in her life so far, describes the treatment as “Magic” . Because of this treatment, James is already on the path to stronger bones and far fewer breaks than his mother experienced.
Tanya didn’t walk till age six. She had her first surgery at four. By the time she was James age, 3 1/2, she had already broken bones more than twenty times. In fact she was born with a broken arm.
Treatments are already improving the lives of those who had OI but it is still widely not known. Approximately 1 in 16,666 babies are born with OI. That’s approximately 16,320 babies in the USA. We need more funding, more research and more treatments and we need to make treatment more available to those who need it.
Because kids should get to run and play, and not worry that every step, every fall, every day might bring a painful break. Playing sports is out of the question, a party at a bounce house a terror.
And James, should just be able to get his rad wookie on.
Like any other 3 year old boy.
So we wear yellow. And we donate to Children’s Miracle Network. Maybe now you will too.