She’s All Smiles, Sans Conversation : Pitcher Bryan Harvey’s Daughter Afflicted With a Rare Syndrome

Bryan Harvey’s 6-year-old daughter smiles all the time, and he wants people to know why.

A perpetual grin is one symptom of Angelman Syndrome, a rare neuro-genetic condition that makes it impossible for Whitney Harvey to talk or care for herself.

As the Florida Marlins’ star relief pitcher, Harvey is taking advantage of his prominence to increase awareness about Angelman’s. Whitney’s case was initially misdiagnosed, and he and his wife, Lisa, want to help other parents avoid the fear and frustration of wondering what’s wrong with their child.

Whitney’s smile brightens newspaper and television accounts about her condition, and it always prompts a response.

“Every time somebody does a story, I hear from a lot of families,” said Jill Hendrickson, national coordinator for the Angelman Syndrome Foundation in Gainesville, Fla. The foundation was established in 1991 with $20,000 Harvey won and donated after being named American League Relief Pitcher of the Year.

“In the United States there are approximately 600 known cases of Angelman’s,” Hendrickson said. “Probably close to 200 of those were diagnosed because of the Harveys. I can’t say enough nice things about them.”

Experts suspect that up to 7,000 cases of Angelman’s may exist in the United States.

“We don’t know how many have been misdiagnosed,” Harvey said. “That’s why we’re trying to get the word out.”

When Whitney was 2, doctors identified her condition as cerebral palsy. But her behavior and mannerisms differed from children with that disorder, which made the Harveys skeptical of the diagnosis.

Then one day a genetic specialist visited the school Whitney attended.

“As soon as the specialist saw her walk, she said, ‘I think I know what she has. I think it’s Angelman’s Syndrome,”’ Harvey said. “So we were just lucky the specialist came along.”

Angelman Syndrome was first identified in 1965, and it was just six years ago that geneticists traced its cause to a missing piece in one chromosome. Life expectancy generally is not affected by the syndrome, but it severely impedes physical and mental growth.

There’s no cure, which means Whitney likely will never talk. She has found ways to communicate, though.

“If she wants something to drink, she goes and gets a cup,” her father said. “If she wants something to eat, she goes where the food is. If she wants to go outside, she points outside.

“She’s a pretty smart kid. She understands a lot that we tell her, but she can’t talk to us and tell us anything.”

That’s the most difficult thing about raising a child with Angelman’s, Whitney’s parents agree.

“The only thing I wish she could do is talk, because when something is wrong, sometimes I can’t figure out what it is,” Lisa Harvey said.

Whitney walks with a stiff gait and takes medication to control seizures, which are now infrequent but at one point occurred with awful regularity--up to 50 times a day. She likes to be outdoors and tries to keep up with her 9-year-old brother, Kristopher.

Because of her active nature, Whitney requires constant attention.

“She doesn’t know what can hurt her,” Harvey said. “She would walk right in a pool and drown.”

A $4 million reliever with 29 saves in his first 31 chances this year, Harvey rarely pitches badly. And he quickly puts the occasional sub-par performance out of his mind.

“Some nights it bothers you,” said Harvey, 30. “But when I go home, I’ve got Whitney and Kristopher and Lisa waiting on me, and once I walk through the door, baseball doesn’t matter anymore. They don’t care.

“We were happy before baseball, we’re happy while I’m playing baseball, and I’m sure we’ll be happy after baseball.”

Starting next month, Harvey will be on his own for the rest of the Marlins’ season. After spending the summer in South Florida, his family will return home to Catawba, N.C., and Whitney will resume daily classes with a special aide.

Her progress is slow, which makes it that much more rewarding.

“Whitney is able to understand more and more every day,” Lisa Harvey said. “Now I can tell her to go get a diaper, and she’ll do it.”

Whitney runs to the television set when it shows her father during a game. A Fu Manchu mustache and 95 mph fastball can make him seem menacing, but he also has a Southern drawl that becomes even softer when the subject is his daughter.

“It was a little tough at first,” Harvey said. “But the way we look at it is that God sent her to us. She’s our blessing. There’s not a day in my life that I wouldn’t want her in it just the way she is.”