Commentary

Villanueva connects with kids through rare disease

Originally Published: February 28, 2007
By Anna Katherine Clemmons | Special to ESPN.com

"Where's Charlie?" they ask. "Is Charlie out yet?"

Twenty-five children and their families sit behind the visiting basket at Madison Square Garden waiting to meet their hero -- Milwaukee Bucks forward Charlie Villanueva, who's in town for a game against the Knicks.

Charlie Villanueva
Gary Dineen/Getty ImagesCharlie Villanueva's story is an inspiration to many.
Some of the children, like 11-year-old Derek Kahn, met Villanueva last year. They are here in conjunction with the National Alopecia Areata Foundation (NAAF).

Derek has alopecia, an autoimmune disease that results in hair loss and baldness. Over five million Americans have alopecia, including Villanueva. Although the condition isn't life threatening, most cases like Villanueva's worsen over time, resulting in hair loss over the entire body (alopecia universalis).

In alopecia's early stages hair loss is gradual, making it hard for children to explain to their friends. And even harder to ignore the insults.

"After Derek met Charlie, he took off his baseball hat for the first time," Derek's mom, Debra, says. "He wasn't afraid anymore to show kids that he's different.

"Meeting Charlie was simply the best thing that's ever happened to him. This year, he started counting down about three months ago, asking us every day, 'When are we going to the game again to see Charlie?'"

Villanueva was diagnosed with alopecia when he was 10. His hair fell out in pieces, and by 12 he was bald. During middle school, Villanueva says he got in trouble for wearing a cap in class. He wore it so kids wouldn't ask questions, and he wouldn't have to be the subject of his classmates' teasing. But hats weren't allowed, and he was called into the principal's office several times until his mom intervened. Still, the questions and comments came, which Villanueva endured in an angry silence.

One of 10 children, Villanueva's family was his support, especially his mother.

"It broke my mom's heart to see me go through that," he says. "She was as frustrated as I was.

"It was hard because kids, they don't understand what you're going through. They would make fun of me, so I would get frustrated, but didn't want to show it. I showed it at home instead."

That frustration motivated him to become a better basketball player, through his high school days in New York and New Jersey and two seasons at UConn. Now that he's fulfilling his NBA dreams (drafted by the Raptors in 2005 and traded to the Bucks last summer), Villanueva wants to use his position to help others.

"All those kids who made fun of me, I thank them now," he says, smiling. "They helped make me who I am.

"I want these kids to know that just because you have alopecia, alopecia doesn't have you. If you let it have you, it's going to tear you down."

The courageous star is slowly receiving recognition for his efforts. As the national spokesman for the NAAF, Villanueva has won the Raptors Community MVP Award twice. Last February, he received the NBA Cares Community Assist Award, a prestigious league honor. Working with his brother Robert, he also started the Charlie Villanueva Foundation (CVF), a non-profit organization dedicated to eliminating bullying through programs focused on outlets of self-expression and growth.

His message is helping.

Charlie Villanueva
David Sherman/Getty ImagesVillanueva takes pride in helping kids with alopecia overcome their insecurities.

Since joining forces with NAAF last year, Charlie has met over 400 children. Last year, he held 12 pre-game meet-and-greet sessions; this season, he's played host for eight such sessions, with three more planned. Over 100 attendees came to the Garden in mid-February, including 25 with alopecia, the largest turnout of the season.

During these sessions, the 6 foot, 11-inch forward shoots around after his teammates so that some of the children can join him on the court.

"It was fun passing to Charlie," Derek says, sitting on the court wearing his Villanueva jersey -- and a Knicks jersey underneath.

Following the practice drills, Villanueva signs autographs and poses for pictures, while talking to the children about living tall with alopecia.

"I never had anyone to look up to, so I'm trying to give these kids hope," Villanueva says. "If I can play in front of thousands of people with this disease, it shows kids that you don't have to hide."

Earlier this year, Derek's fifth grade class held a show-and-tell where each student was asked to explain his or her favorite possession. While some class members brought in baseball cards or Xbox sets, Derek talked about the purple rubber bracelet given to him by NAAF, modeled after the yellow Livestrong bracelets. The message inscribed on the outside? "Free to Be Me."

Derek hasn't taken the bracelet off since he got it.

"Charlie taught me that just because you have alopecia on the outside, it doesn't mean you can't be a good person on the inside," he says. "It shouldn't hold you back from anything you do."

Angela Nittoli, too, has been inspired by Villanueva's example. Nittoli, 15, wears a black, curly-haired wig. She didn't buy it until this year, having gone to school before with a bandana wrapped around her head. She endured years of insults and teasing until she finally erupted after being called a "bald bitch" by a classmate. Nittoli punched her.

She'd simultaneously tried various therapists' offices until she found the right fit a few months ago.

"I found a therapist who has alopecia," Nittoli says. "Finally, I felt like I was talking to someone who could really understand me and what I was going through."

Recently, she asked the counselors at her high school if she could speak to the entire student body about alopecia.

"I want kids to know how it feels to be treated a certain way," Nittoli says. "I want them to understand that just because I have alopecia, it doesn't mean I'm not still a person just like them.

"I think it's amazing (Villanueva) does this. Not only him stepping out for all of these kids, but for him saying, 'I have alopecia and I'm not worrying about me. I'm worrying about other people.'"

"I'm a firm believer that everything happens for a reason," says Villanueva, "and I think I was put in this world to help kids out.

"There were times when I thought 'Why me?' but now I know why. When I see the impact this has, it makes me hungry to do more."

Anna Katherine Clemmons is a contributing writer for ESPN The Magazine.