Living with a rare disease can be a struggle for many parents who watch their child suffer through the worst of it. But many endure and see the potential for a quality of life that’s paved with possibilities.
For the Lush family, they’re taking things one day at a time when it comes to Zoe. The adorable 6-year-old was diagnosed with osteogenesis imperfecta (also called OI), a genetic condition that causes her bones to be brittle and break easily. Her parents, Chelsea and Curtis Lush, found out about Zoe’s condition while she was still in the womb.
An ultrasound revealed fractures, broken ribs, and delayed growth in her limbs, and doctors told the Lushes that Zoe might not reach her first birthday. They also recommended that the pregnancy be terminated, putting Chelsea and Curtis on an emotional rollercoaster. Further testing revealed that Zoe was misdiagnosed with a more severe form of OI, and instead, actually had type 3.
Though still severe, the parents chose to welcome Zoe into the world in October of 2010. They tell Barcroft TV that changing her diaper took three people in order diminish the chance of injury. Before the age of 1, Zoe experienced over 100 broken bones. Over the years, she’s had multiple surgeries including one to address cervical kyphosis.
Zoe’s kyphosis diagnosis was causing compression on her spine, leaving her susceptible to internal decapitation. As Chelsea shares x-ray images of Zoe, she explains that because of this, Zoe’s been in a neck brace since the age of 2 ½. The surgery and brace were necessary to help keep her spine from collapsing.
You’ll notice Zoe’s sweet disposition and infectious giggle. The cheerful little girl is now old enough to express herself and ask for help. You can see her high-fiveing her mom after she successfully sits up without incident.
An outing to her favorite park shows her enjoying some playtime on the slide and her mom says she gets to interact with other kids too. But Chelsea admits she does worry about Zoe getting hurt while hanging with other children. One wrong move could lead to fractures.
Chelsea and Curtis tell us that there’s no life expectancy for OI, but they’re grateful that there are treatments, in spite of there being no cure. Chelsea speaks on having no regrets and is optimistic for Zoe’s future.
In addition to seeing her story in this Barcroft video, you can catch up with Zoe on her Facebook page, called The Adventures of Zoe Lush. The family shares updates on her progress and some of the fun things she’s got going on. Surrounded by love and a big support system, Zoe’s body may be fragile but her spirit certainly isn’t. And like her mom said, she’s a total BOSS. Keep rocking Zoe!
Are you familiar with Zoe’s condition – OI? What do you think of this amazing little girl? Share with us in the comments!