Mysterious ailment claims teen
Wednesday, May 5, 2004 7:32 AM PDT
By Associated Press
Printable version
E-mail this articleMILTON, Wash. -- A 13-year-old boy, stricken six years ago with a mysterious degenerative disorder that eroded his nerves and paralyzed his muscles, has died.
Although Stephen Brett went from being an active second grader to a child confined to a motorized wheelchair in just three months, he attended elementary and middle school with his classmates and followed the Seattle Mariners with a passion.
He was among the first to enroll in a pioneering pediatric care program to provide palliative, or hospice-like care for children with severe, life-limiting illnesses. The pilot program started by Children's Hospital and Regional Medical Center in Seattle in 1997 has since been formalized and now helps as many as 200 children a year.
Such care helps smooth the transition between hospital and home and provides emotional and physical support, as well as family respite and pain management for seriously ill children.
The boy died last Thursday at his home in this small city between Seattle and Tacoma. His parents were at his side when he died in his own bed, five weeks after he had been hospitalized for a series of respiratory arrests.
"It (palliative care for children) is a huge movement now across the country," said Dr. Ross Hays, director of the program at Children's Hospital.
Stephen's condition remained a mystery to dozens of doctors around the country, who ruled out a slew of disorders, including a rare form of amyotrophic lateral sclerosis, or Lou Gehrig's disease.
His family believes the illness, which was never diagnosed, may have been a severe autoimmune reaction to a childhood vaccination. A claim filed with the federal Vaccine Injury Compensation Program is pending.
Stephen enjoyed three months of improvement at the beginning of last year when doctors gave him a combination of new medications, including one used for Parkinson's disease.
The boy, who had been unable to talk, began speaking in 12-word sentences after two weeks, said his father, Bob Brett.
"We were overjoyed," he said.
But the boy developed a life-threatening fever in response to the medication, which had to be discontinued.
In hopes of learning some answers, the family has agreed to an autopsy but it was not known Tuesday whether one had been performed or what it might have found. Neither the Pierce nor King County medical examiner's offices were involved, spokesmen said.
Though too weak to use even a keyboard-assisted communication device, Stephen kept up with his classmates with the aid of one-on-one assistance, using his eyes and smile to communicate answers.
"He teaches them joy," his fifth-grade teacher, Dan Cantillana, once said. "This is a child who knew what it was like to run and play, and there's still joy in his heart."
Stephen's plight moved members of his community, who held several fund-raisers, including baseball games, walkathons and car washes, to help pay for some of his medication so his parents could continue to care for him at home.
"He was a kid who loved everyone and did his best to find the humor in life," Bob Brett said. "He always wanted everyone to be happy."
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A memorial service was scheduled for 2:30 p.m. Saturday at Hedden Elementary School, 11313 Eighth St. E. in Edgewood. The family suggested donations to Give Kids the World or the Starlight Children's Foundation.
On the Net:
Give Kids the World: http://www.gktw.org
Starlight Children's Foundation: http://www.starlight-washington.org
Children's Hospital and Regional Medical Center: http://www.seattlechildrens.org/home/default.asp
Institute of Medicine: http://www.iom.edu
National Hospice and Palliative Care Organization: http://www.nhpco.org/templates/1/homepage.cfm
Copyright 2004 Associated Press. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.
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