Roanoke Times
Copyright (c) 1995, Landmark Communications, Inc.
DATE: SATURDAY, November 27, 1993 TAG: 9311270181
SECTION: SPORTS PAGE: C7 EDITION: STATE
SOURCE: BOB FINNIGAN SEATTLE TIMES
DATELINE: SEATTLE LENGTH: Long
Henderson is renowned for huge defensive plays, home runs and happiness, his trademarks a wide-body smile and good-natured give-and-take with fans, teammates and opponents.
But for many of those years, that smile shone in spite of a difficult situation that Henderson and his wife, Loni, dealt with at home, the unknown illness of their eldest son, Chase.
"That's `Chase' like in the bank, you know, Chase-Manhattan," Henderson said, with typical humor. In fateful irony, a constant smile is one of the symptoms of Chase's problem, which has been diagnosed as little-known Angelman syndrome.
"It was difficult for a long time because we did not know what was wrong with Chase," Henderson said this week, playing a raucous card game with Chase, 7, and his brother Trent, 5, at their home in Bellevue, Wash. "No one did for a long time. We just knew something was not normal. The not knowing was rough at times, real rough."
"It was terrifying for four or five years," said Loni, who said the family is thankful it knows what it is dealing with and wants to share that awareness with other families who may have similar children.
"Many medical people are not familiar with Angelman and it is often misdiagnosed as cerebral palsy, which covers a broad range of medical problems in kids," she said. "But the not knowing, for sure, is the worst part and that's where we were until two years ago."
Angelman syndrome first was diagnosed in 1965 by a British physician, Harry Angelman, who first called it the "Happy Puppet Syndrome" because symptoms include upraised arms, a stiff-legged, jerky gait, inability to speak and the distinctive smile, making the children resemble puppets on a string. Only five years ago researchers discovered that the illness stems from abnormal development of the No. 15 chromosome.
"The first sign something was wrong with Chase came about age 6 months," Loni Henderson said. "We thought he had lazy eye, a muscle problem. When doctors suggested it might be neurological, we were offended."
Back in Seattle, Chase's pediatrician became concerned when the baby was not rolling over as he lay down or attempting to sit up. "We realized his development was slow," his mother said. "But we thought it was related to his size at birth. Chase was so small everyone thought he was premature."
Doctors initially diagnosed cerebral palsy, which covers a wide spectrum of motor and muscular problems in children. With Chase nearing his first birthday in June 1987, mother and child spent two days at the University of Massachusetts Medical Center for tests. "We had EEG, MRI, the whole work-up," she said. "They couldn't find anything for sure. It was so frustrating."
Chase began having several seizures per day. Eventually, they were controlled with medication. "But when he had a cold or fever, he couldn't take the medicine," Dave Henderson said. "So on came the seizures."
The worst point of the uncertainty might have been Christmas 1989, when Chase was rushed to a hospital. When her son felt better, Loni wanted to take him home.
"Our doctor was off for the holiday and the staff at the hospital did not want to let us take Chase out," Loni said. "He did not speak, he was thin and dehydrated. They had not read our file, which by this time was inches thick. They were almost accusing us of child abuse."
The first person to suspect Angelman syndrome was Dr. Bonnie Pagon, head of the genetics clinic at Children's Hospital in Seattle, who had first seen Chase at 21 months. Recently developed tests, which included a DNA analysis, confirmed that suspicion in 1991.
"It was difficult to hear, but also very helpful," Dave said. "We knew what we were dealing with and, in perspective, Chase is healthy in all other respects."
Chase is a rambunctious child, whose smile is as joyful as it is constant. He hugs visitors, sits with them and, yes, eventually pulls their hair or goes for their glasses. Most of all, he is happy.
"The smile is not entirely just a muscular effect of the illness," Loni said. "Angelman kids are largely happy. Chase is, and it makes it a lot easier. He loves to play with water and to run his hands over plastic wrapping. I'll be doing something in the kitchen and he'll grab my hand and drag me over to the sink. I put him up on a chair and fill the sink with water, give him a couple of plastic measuring cups and let him play away."
Chase learned to walk this year. Loni saw his first unassisted steps in May, but it was September before Chase walked for his father.
"The next day I hit two homers off Randy Johnson in the Kingdome," Dave Henderson said. "I guess he didn't realize how pumped I was after seeing my son walk."
Angelman Foundation experts suspect there may be as many as 67,000 cases of the illness in the United States. Chase is one of a half-dozen children diagnosed with Angelman syndrome in the Pacific Northwest.
The Hendersons hope that Chase's story sheds more light on the illness.
"We are hoping people will learn from what we went through," Dave said.
Loni has both boys at the same school; Chase is in second grade, special education, and Trent is in kindergarten. "We want them to live as normal lives as possible," she said.
Chase keeps problems in perspective for Dave Henderson. "I hear players say sometimes that someone close to them dies and puts things in perspective," he said. "Life is always in perspective for me, every day."
Keywords:
BASEBALL
by CNB