Tuesday, April 18, 2006

Family copes with deadly disease, MPS

By FRANK PHILLIPS / frankphi@hotmail.com
Submitted photo
The Durcholz family includes Annette, Chris, Lee, Ben, Emily and Patrick.

When a child dies, the community mourns. It is everyone’s loss.
In many families around the world, including Chris and Annette Durcholz’ family in Brazil, children are born with a premature death sentence.
Many children will die due to MPS, Mucopolysaccharidoses, a variety of diseases “caused by enzyme deficiencies that prevent the body from breaking down and recycling materials in cells which can result in stunted growth, stiff joints, speech and hearing impairment, breathing problems, mental retardation and a dramatically shortened life span,” according to information supplied by the National MPS Society.
The Durcholz family lost their first child, Zach, to the disease eight years ago, when he was 11.
Today, they have another son, Ben, who is 4, who will also die early due to the disease.
“There is no cure,” Annette said. “Even if a cure was developed, it would be too late to help Ben.”
Ben was diagnosed with MPS Sanfilippo B, while still in Annette’s womb. The couple suspected he might be born with the disease after Zach’s death.
The national organization is searching for families who are fighting MPS. A photo exhibit will travel across the country, starting at New York University, to make people aware of the disease and the availability of support.
A virtual replica of the exhibit can be seen at www.jointhesearch.org.
The disease is very difficult to diagnose.
“Because each individual’s disease progresses at varying rates, it may take years and numerous visits to a broad range of specialists before MPS is recognized and an appropriate diagnoses by a geneticist is made,” according to information from the National MPS Society.
The family belongs to Annunciation Church in Brazil, where they find great comfort.
“Our faith is the only thing that gets us through,” Annette said. “Our faith has grown so much.”
Ben is in preschool and Annette advises parents of children with MPS to seek support from other people, wherever it can be found.
“Get lots of support from family and friends,” she said. “Get your child in pre-school as early as possible. Connect with other families who have children with the disease.”
Chris and Annette are members of the National MPS Society.
“It is a devastating disease,” she said. “You need lots of support.”

On the Net:
National MPS Society: http://www.jointhesearch.org