balmain PHOTOGRAPHY
It sounds like she is snoring,
but Camille is just
trying to breathe.
Part TWO
photographs by Maxwell Balmain
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.