balmain PHOTOGRAPHY
It sounds like she is snoring,
but Camille is just
trying to breathe.
photographs by Maxwell Balmain
When the two-year-old inhales, the soft tissue in her larynx collapses. She was born with the condition. Something was wrong with her umbilical cord. When the 2-year-old inhales, the soft tissue in her larynx collapses. She was born with the condition. Something was wrong with her umbilical cord.
Camille also suffers neurological problems. She cannot sit up straight. She cannot roll over. She can barely swallow.
What's wrong with her? Good question.
There is no name for it.
Camille is just one of many children who are born with physical or developmental problems that never get a full diagnosis.
"Kids with complex developmental disorders don't live in hospitals, they live at home," said Dr. William Graf. "So the burden has been shifted back to the parents."
Graf, along with Doug and Mary Schwed, a Bellevue couple, started the nonprofit Bellevue-based Accord Foundation in 1999 to provide medical and support services for children with developmental disorders and their families.
At least 3 percent of all children are born with complex developmental disorders, according to the foundation. And about half never receive a diagnosis.
The families of those patients face numerous challenges as they try to find information, treatment and help, Accord says, and that is the niche the foundation wants to fill.
About 75 children with unnamed disorders are being treated by Graf and the Accord Foundation.
The foundation would like to treat more children and provide support for their families, but there just isn't the time or money, Mary Schwed said.
The Schweds met Graf, a pediatric neurologist, at Children's Hospital a few years ago. They have six children, and their youngest, Matthew, was born with a hole in his heart, Mary Schwed said.