A woman with a potentially fatal condition for which she’s been admitted
to hospital numerous times is finally able to live independently.
Celeste Labayen (32) from California in the US suffers from a rare
genetic disorder called osteogenesis imperfecta type one, which means she has
highly fragile bones that can break from the slightest movement.
Her bones used to fracture when playing with her siblings and even
when her parents held her. When she was 10 she severely fractured her femur,
which left her wheelchair-bound for 15 years.
“When I was a kid I could break a bone from doing anything,”
Celeste says. “It was really tough on my parents because they were trying to
deal with taking care of a child with a condition they knew nothing about and
were being wrongfully accused of intentionally hurting me.”
After having rods put in both tibias and her femur as a teenager,
doctors gave her pamidronate injections for the next 10 years to increase her
By the age of 25, Celeste’s bones were finally in good enough shape
for her to get out of her wheelchair and relearn how to walk, which allowed her
to move across the country by herself a mere two years later.
“Those procedures really changed me,” the 32-year-old says. “My
bones are so much stronger now. I felt like a baby learning how to walk. It was
the first time I was able to get out of my chair since I was 10 years old.
“I had to teach my body how to stand up again and I had to rebuild
all of the muscles. At first it was difficult just to try to stand up.
“I’m living in an apartment now and being independent. I have a
roommate who helps me with what she can, but for the most part I’m doing things
“I’m able to walk my dogs and go grocery shopping alone,” she says.
“I’d never have imagined this.”
Celeste has adapted to her surroundings but must do everything much
more carefully than other people to ensure she doesn’t break or fracture her
Her adaptive lifestyle has also allowed her to go on holiday abroad
and she’s visited Mexico, the Dominican Republic and the Philippines among
“Traveling has been much easier,” she says. “There are so many more
places I can get to.”
While her life has drastically changed, the condition still affects
her in several ways and she often experiences chronic muscle and joint pains.
“It’s a lot better but I still get aches and pains on a regular
basis,” she says. “Sometimes I’ll be out running an errand and I’ll randomly
feel pain in a certain part of my body.”
She also hasn’t had any luck finding employment since moving to
California and feels her problems with mobility is the reason why.
“I still haven’t been able to find a job. That’s been a really
tough thing to deal with,” she says.
But for her one of the worst effects of the condition is that it
makes it difficult to find a partner who’d be interested in building a future
“It’s really difficult to find someone who’s serious about dating
me. I hope that eventually changes.”
Sources: Magazine Features Pictures: CATERS/WWW.MAGAZINEFEATURES.CO.ZA