Going for Their Biggest Save : Bryan and Lisa Harvey Publicize Disease Afflicting Daughter

Bryan and Lisa Harvey remember clearly the first time they peered at a picture of their daughter’s chromosomes, photographed under a microscope. Before their eyes was the reason that Whitney, a happy little girl who will turn 5 next week, is never expected to talk, has suffered from seizures and would walk straight into a swimming pool if no one were there to stop her.

“It was like a hairline fracture in chromosome No. 15,” Lisa said.

“There it was,” said Bryan, the Angels’ top relief pitcher. “You barely can see the difference with your eye. It’s unbelievable that such a little thing can cause that much damage.”

Until two years ago, the Harveys believed Whitney had cerebral palsy. Finally, a genetic specialist who visited Whitney’s classes for handicapped children at John O. Tynes Elementary School in Placentia recognized the girl’s herky-jerky movement as characteristic of a rare and often misdiagnosed neurological disorder that is known to affect only about 400 people in North America. When the Harveys first learned of their daughter’s disorder, there were only 160.

It is called Angelman Syndrome, after Dr. Harry Angelman, the British physician who identified it in 1965.

“Isn’t that ironic?” Lisa said. “For a couple of years, we called it Angleman’s Syndrome. We just found out it’s pronounced Angelman’s. “

After Harvey’s 46 saves and 1.60 earned-run average last season earned him the Rolaids Relief Man award as the American League’s top reliever, he designated the $20,000 charitable contribution to the Angelman Syndrome Foundation, a group incorporated only this year. Its president, Hal Lippman of Falls Church, Va., whose 8 1/2-year-old daughter, Danna, also has Angelman’s Syndrome, was nearly speechless with gratitude.

“This whole thing with Bryan is so absolutely special,” he said. “What we want to do is educate and inform the public and the medical community.”

When Harvey presented a check to Lippman at a recent banquet, Whitney, in the audience, ran to the podium. Harvey held her in his arms while he spoke into the microphone.

“She wanted to come up,” Harvey said. “I saw her, and said, ‘Come on,’ and she walked up. I think it worked out good.”

Lisa, sitting in the audience, sent Whitney up.

“When she saw her Daddy, she had to go up there,” Lisa said. “She was getting antsy anyway. It was a long time for her to sit still.”

For the Harveys, there is purpose in being public.

“Now we’re hopeful more doctors will learn about it, and they can find out some more answers,” Bryan said. “It may help somebody out there whose child is undiagnosed or diagnosed with cerebral palsy.”

Among the main characteristics of Angelman Syndrome are severe mental retardation, an excessively happy demeanor, and the absence of meaningful speech, though there is often response to speech.

There is also a movement or balance disorder that results in stiffness or jerkiness.

“They have another name for it, the Happy Puppet Syndrome,” Bryan said. “When they walk, their arms go up and down. . . . They use their hands, but they can’t finesse anything, because their hands are wide open.

“When Whitney tries to love you,” he said, reaching his arms out like clumsy paws, “she’ll grab and pull and pinch.”

The Harveys, who have been married nine years and been sweethearts since they were 16-year-olds living in North Carolina, have a son, Chris, 8. It was when Whitney was slow to do the same things that Chris did as a baby that Lisa became concerned.

“I knew something was wrong when she didn’t start sitting up at 6 months like Chris did. You’re kind of in denial,” she said.

“We were in Puerto Rico, where Bryan was playing winter ball, and I got to where I couldn’t handle it. I took her back to my family doctor in North Carolina and he said, ‘No, something’s definitely wrong.’ ”

The first diagnosis was cerebral palsy.

“I was devastated,” Lisa said. “I knew that was not what it was. They say that with cerebral palsy, at birth the oxygen is cut off to the brain. That never happened. I read articles, and nothing seemed to fit.”

When they learned the true diagnosis, Lisa said, it was hard.

“You always have a ray of hope, and then you know for sure,” she said. “It’s always going to be like that. But you still have hope. It was really good to find out the diagnosis. After the meeting with the doctors, I was kind of excited.

“They say none of these kids ever talk. But I say every child’s an individual. Whitney may talk. It might be one word or it might be 10.”

Caring for a child who is so severely handicapped is a strain, and Bryan is sorry that his work keeps him on the road so much.

“When Lisa has to do it all by herself, it wears her out,” he said. “You’ve got to keep your eyes on her (Whitney) all day. She doesn’t know what water is or to fear water. We have a pool and we have a gate on it. But when we go out to swim, she’ll walk right into the water. She doesn’t know it’s over her head. She doesn’t know she could drown.”

Whitney is able to feed herself, sitting in a high chair using her hands and a spoon, and she reacts to what her parents and brother tell her.

“She can respond good, but she’ll never be able to talk, they say,” Bryan said. “We tell her to do something, and she understands. If she wants something to drink, she’ll go get her cup. If she wants something to eat, she’ll go get her plate.”

And Whitney has a distinct personality.

“She’s her own self,” Bryan said. “She’s unbelievable. It’s her way or the highway most of the time. She’s not much for TV, but she likes looking at magazines. She can turn the pages pretty good. She loves to take a bath. She’ll take a bath forever. She’ll crawl in with her clothes on. She ain’t too big on sitting at a baseball game.”

Sitting through a game might be too much to ask, but Whitney recognizes that her father is a baseball player, and seems to realize that is often her Daddy on the mound in the late innings.

“She goes crazy,” Lisa said. “Not too long ago, we pulled into the stadium, and she got so excited. It wasn’t even the season, but she figured we were going to see Daddy. When she sees him on TV, she’ll punch the TV.”

The most trying times for the Harveys have been during Whitney’s seizures, which have quieted after reaching a distressing frequency.

“Last year at spring training, she was sick the whole time,” Lisa said. “She was having 50-some seizures a day in Arizona, every two or three minutes. She’d just be walking and black out. I couldn’t let her out of my sight.”

The seizures began subtly several years ago, but Whitney has had three severe ones.

“At first, she would just fall down and get right back up,” Bryan said. “Two years ago, she had her first bad one, what they call a grand mal. It went on for 40 minutes. . . . You’re talking about scary. We were taking a nap and then she was hitting me. She was having a seizure and her eyes went over to the side.”

“It was awful,” said Lisa, remembering that she called 911 as Bryan frantically went in search of help from their home in North Carolina. “I thought she was dying. I just knew she was dead, and so did Bryan. But it worked out.”

Another time last season, Whitney was so ill she was hospitalized. There was a Saturday game against the New York Yankees, and Harvey didn’t get to Anaheim Stadium until midway through the game, but it didn’t matter a bit. It was one time when his call never came.

“It was like a 7-2 game and (Chuck) Finley pitched almost the whole way,” Harvey said.

This winter, the Angels made Harvey the highest-paid reliever in the game, signing him to a five-year, $15.5-million contract.

Lisa decided it was a fine time to hire a live-in, a known and trusted companion to help care for Whitney.

Bryan’s baseball career kept him from being on hand when Whitney was born, but it has only helped the couple care for her.

“When I was expecting with her, that was the first year he was invited to the big league camp,” Lisa said. “He didn’t see her until she was a month old. He stayed in Arizona. We couldn’t afford to make the trip. My mom and dad were practically supporting us. When she was a month old, we drove to Midland, Tex., and he saw her there.

“We think it was all planned out since the day Whitney was born,” Lisa said. “Whitney was 2 months old when Bryan got called up to the big leagues. My mom and dad had been sending us money. We couldn’t afford anything but our rent. When he got to the big leagues, the paychecks skyrocketed. Everything has been taken care of ever since. We believe that’s the way the Lord planned it.”

Now, they are trying to help other parents of Angelman children--parents who might not know who they are yet.

“There’s no way to describe it,” Lisa said. “You really feel great about it. I’m so excited that maybe it will help some other family. We’re really fortunate to be in the situation we’re in. Maybe it will help some other family find out what their child has. It’s a good feeling to know.”