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A couple of years ago I spent some time with an amazing family who live on the outskirts of Seattle. The parents have a two-year-old daughter named Camille. Camille was born with several neurological problems.
She cannot sit up straight. She cannot roll over. She can barely swallow. She has severe problems with her larynx which collapses every time she opens her mouth.
She can barely breathe. Its hard on a little girl. It is also really hard on her family.
What's wrong with Camille? Well, no one really knows. Her parents have never been given a full diagnosis. This fact alone causes all kinds of problems and just adds to the burden that Jim and Karin face each and every day.
Photographing this family on a typical day was exhausting. For Camille and her parents every day is exhausting. Their days are filled with love, heartache and stress. Their patience is inspiring.
This is their story...
It sounds like she is snoring, but Camille is just trying to breathe.
story by Mark Baker
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.
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.
Doctors told the Schweds his condition was not uncommon, but about a month later he developed congestive heart failure, Mary said. Today, Matthew is 11 and has something wrong with every organ system in his body, she said.
He does not digest food properly and takes all his food and medication intravenously. And, at less than 4 feet tall and 55 pounds, he is about the size of a 5-year-old.
There's no name for what is wrong with Matthew, Mary Schwed said.
And that makes it difficult to treat him, Graf said.
The Schweds and Graf came up with the idea of creating the foundation so children like Camille and Matthew and their families would have a place to go, a place where they might be understood.
"Dr. Graf was the one who really gave us the first hope," said Camille's mother, Karin Coppernoll of Bothell.
The letters in "Accord" stand for Advocacy for Children with Complex, Orphan and Rare Disorders.
"Orphan" is part of the foundation's acronym because families whose children have no diagnosis can feel orphaned in terms of finding appropriate, helpful support and treatment, according to the foundation.
Most health insurance companies do not cover visits to Accord, Graf said, because they require a diagnosis.
Camille's parents, Jim and Karin Coppernoll, also have a 10-year-old son, Clint, and the family receives state aid for Camille's in-home health care needs.
"When it comes to long-term coverage (for children like Camille), most health insurance policies get real vague and they wiggle out of it," Jim Coppernoll said.
A lack of insurance coverage means a lack of financial support for an organization such as Accord, Graf said. Graf devotes one day a week, Fridays, to Accord. Once a month, he sees children at the foundation's clinic in Bellevue.
Graf recruited two nurses from Children's Hospital, Linda Covert and Therese Vafaeezadeh, to help. They each put in 10 hours a week.
"They are not just treating (Camille), they are treating our whole family," Karin Coppernoll said.
The Coppernolls met Graf when Camille was just 3 months old. They had been told that she always would be "a vegetable,'' Karin said, that she would have no "social smile."
"But one time my daughter and I made eye contact, and I just knew somebody was in there," Karin said.
Camille's various ailments cause her to cry often. Fed through a tube, she had severe reflux problems when Graf first saw her. She condition persists, but Graf has been able to treat her for it.
"We have a wonderful medical community out there, but there is no one for us that could do what the Accord Foundation can do," Jim Coppernoll said.
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