Lee seeks to help find cure for daughter's retinal disease

Originally Published: May 21, 2007
By Jerry Crasnick | ESPN.com

As celebrity spokespeople from Michael J. Fox to Katie Couric can attest, the process is rarely as simple as going out and choosing a cause.

More often than not, the cause chooses you.

Leber's Congenital Amaurosis reached out and tapped Derrek Lee's shoulder on Sept. 14, 2006, when he received a phone call from his wife telling him their 3-year-old daughter, Jada, was feeling discomfort in her right eye. Lee singled in four at-bats in a Chicago Cubs win over the Dodgers, then rushed off to the hospital for an update from the doctors.

Derrek Lee
Jonathan Daniel/Getty ImagesDespite having many personal issues to deal with, Derrek Lee still leads the NL with a .394 batting average.
When the test results came back the next day, Derrek and Christina Lee received the type of news every parent dreads: Jada was afflicted with LCA, a rare, inherited retinal disease typically found in children, and had suffered a substantial loss of vision in her right eye.

Some people lament their fate and others embark on the task of bringing about change. Barely two weeks after Jada's diagnosis, Lee was standing before a podium to announce he's in this fight as more than an innocent bystander.

Lee and Boston Celtics owner and CEO Wyc Grousbeck, whose teenage son also suffers from LCA, banded together to form Project 3000 in an effort to eradicate the disease. The immediate goal of the project, which works in conjunction with researchers at the University of Iowa, is to identify the estimated 3,000 LCA sufferers in the United States so they can undergo genetic testing. The total cost of the screenings is about $3 million, but it will take far more to fund clinical trials and additional research.

Lee, who leads the National League with a .394 batting average, is an established star for one of baseball's marquee franchises, so he's in a rare position to make his voice heard.

"We as athletes are able to reach a lot of people quicker than someone who might not get the media attention,'' Lee said. "When it's your daughter, you do what you can. It's a very rare disease, so 99 percent of the country hasn't heard of it. We just want to bring awareness to it.''

It's a task that is well-suited for Lee's temperament. The catch-all description of "good guy'' is tossed around so cavalierly that it's almost irrelevant in sports, but Lee possesses all the required attributes. As the son of a scout (Leon) and nephew of a former big leaguer (Leron), he knows how to act on the field, in the clubhouse and before the general public.

"He treats everybody the same as when he was hitting [.233] his rookie year in Florida,'' Cubs closer Ryan Dempster said. "Now he's hitting almost .400 and he's a Gold Glove first baseman and a batting champion, and he doesn't change. He's the exact same person.''

Lee's unflappable demeanor was tested during the 2006 season. His problems began when he hurt his left shoulder diving for a foul ball in the World Baseball Classic. Then he broke his right wrist in a collision with the Dodgers' Rafael Furcal on April 19 and was never quite the same.

To learn more about Project 3000, click here. To learn more about the Foundation Fighting Blindness, click here.

After hitting .335 with 46 homers and 107 RBIs in a monster 2005 season, Lee went .286-8-30 in a mere 50 games. Without Lee, the Cubs dropped from ninth to 15th in the National League in runs scored.

"I just wasn't meant to be on the field last year,'' Lee said matter of factly.

Still, nothing could prepare him for the emotional trauma he experienced when he learned of his daughter's condition. Dr. Stephen Rose, chief research officer for the Foundation Fighting Blindness in Owings Mills, Md., says the field of vision of a child afflicted with LCA gradually shrinks to the size of a pinhole, like a camera lens shutting down. It's a more aggressive form of retinitis pigmentosa, the eye disease that caused longtime baseball executive Mike Veeck's daughter to go blind.

Researchers have identified nine genes that account for more than 70 percent of known LCA cases. That's why it's so important for LCA sufferers to be found, so they're in the pipeline in the event of medical advances and potential sight-saving treatments. The days of doctors' telling anxious parents to teach their children Braille and abandon hope of a better life are quickly becoming history.

"There's no magic bullet,'' Rose said, "but we're committed to finding treatments and cures so that no adult or child has to go blind. We're in the business to go out of business.''

The response by Lee's teammates to his plight is evidence of their respect and admiration for him. Cubs catcher Michael Barrett donated $50,000 and pledged an additional $10,000 for every homer he hits this season. Dempster donated $50,000 and pledged $1,000 for every strikeout he records.

When Dempster heard about Jada in September, he walked into the Cubs' family room and hugged his infant son and nearly cried. It's tempting, he says in hindsight, for professional athletes to lose touch when they're making millions of dollars, traveling first-class and playing before 40,000 fans every night. But when it comes to the most important issues, such as family and health, they're just as vulnerable as everyone else.

There's no magic bullet, but we're committed to finding treatments and cures so that no adult or child has to go blind. We're in the business to go out of business.

-- Dr. Stephen Rose, chief research officer for the Foundation Fighting Blindness

"It's humbling when something like this happens -- something so unfair,'' Dempster said. "For a beautiful, healthy child like that to suddenly start losing her eyesight is pretty tragic. If they can find a cure and stop it one day, that would be great.''

For now, Jada's energy helps her father through the daily grind. He's a mellow guy by nature and she's a miniature dynamo, smiling constantly and talking incessantly. Lee dotingly refers to her as "a little woman.''

As Jada, now 4, recently told her father, "Daddy, you're the big boss. But I'm the little boss.''

While Jada's vision loss is confined to the right eye, Lee arrives at the park each day with the realization that he could get another phone call with the distressing news that the problem has spread. Derrek and Christina Lee are conditioned to hope for the best and brace for the worst.

"It's always in my mind,'' Lee said. "It's scary. She has this disease and it causes severe vision loss, so it's a distinct possibility. But you can't be down all the time. She can sense our moods, so we have to stay upbeat for her.''

His professional stoicism notwithstanding, Lee is a competitor at heart. When his home run swing was missing in April, he kept lining doubles to the gap. And in the sanctuary of the dugout, his teammates see how much he cares.

"He wants to be in the lineup every day, and he competes,'' Cubs manager Lou Piniella says. "I enjoy watching him slam a helmet once in a while.''

In the end, Lee's story is about a little girl's spirit, her parents' love, and the baseball field and clubhouse providing an emotional haven. Maybe that combination is enough to generate some good from something so bad.

Jerry Crasnick covers baseball for ESPN.com. His book "License To Deal" has been published by Rodale. Click here to order a copy. Jerry can be reached via e-mail.

Jerry Crasnick | email

ESPN.com MLB Sr. Writer