Albinism: Caught Between Dark and Light

Stares, taunts fill life of black twin, 10, with albinism; brother unaffected.

October 1, 2009, 5:55 PM

Oct. 1, 2009— -- Kenyen and Khari Flowers are 10-year-old, African-American fraternal twin brothers. Born 25 minutes apart, they're so close that Khari says he considers Kenyen "the second part of my heart."

As twins, they share almost everything: riding bikes through their suburban Chicago neighborhood, battling it out with video games in the living room; everything, that is, except their skin color.

Kenyen has albinism, a hereditary condition in which the skin, hair and eyes produce little or no melanin, resulting in a lack of pigmentation. While Khari and the rest of the Flowers family have what Kenyen calls "chocolate" skin, he says his skin tone is "banana mixed with vanilla -- bavilla."

Kenyen's appearance generates stares and whispers, and, at school, teasing surrounds him. Strangers often assume he's not part of his own family.

"When people ask questions like, 'Are you really his brother?' It makes me feel, like, nauseous," Kenyen said. "... It's just that I'm lighter, and then they don't understand it."

But if young Kenyen needs role models to help him overcome the social stigma of albinism, then several examples await, including an African-American fashion model and actor-comic who share his condition and a determination to prove the skeptics wrong.

In addition to a distinct color difference, people with albinism also suffer from low vision and nystagmus, a condition marked by involuntary eye movement. Some people with albinism, traditionally referred to as albinos, are even legally blind.

As a result of albinism, Kenyen requires a special teaching aide and equipment at school to help him with his limited vision.

The condition, which affects one out of every 20,000 people worldwide and cuts across all ethnicities and even the animal kingdom, is the result of a recessive gene both parents must have.

Kenyen says he remembers the moment he first realized he was different. "I was with my mom and when she was carrying me, I was holding on to her," he told ABC News.

Looking down at his white skin pressed up against hers, Kenyen says all he could think was "Wow."

Khari, the more athletic of the two, and ever the protector, often believes he has to defend his brother.

"I heard people call him albino, freak, idiot, retard, all kinds of names," he said. "When I hear those, I just fight back, and say, 'What happens if you're him?'"

Teasing: 'My Daughter Doesn't Have a Friend'

For most children with albinism, teasing is common. Fifteen-year-old Angel Stillman of central Pennsylvania has had to transfer in and out of eight different schools since pre-school because of relentless taunting.

"After a while, it just got to a point where it was really bad," Angel said. "It happened almost every single day when I got into middle school. Having people pick on you that severely, like try to trip you and make fun of you so that you don't really fit in anywhere, it kind of makes you feel like, 'Why do I even come to school?'"

Angel's mother, Paula Stillman, agreed that classmates couldn't look beyond the skin tone.

"People can't see who she is," Stillman said. "They just automatically look at her and put her in a cubby hole. And just seeing her wanting to fit in, wanting to have one friend ... that's sad. My daughter doesn't have a friend. ... People don't give her a chance."

Click here to see photos of people with albinism

To try to remove herself from public scrutiny, Angel began taking classes online, communicating with her teacher and classmates via computer speakers. But for the naturally outgoing and gregarious teenager, it wasn't a good fit.

"I probably spend, out of 24 hours, probably 20 hours alone," she said. "If [I could] have one wish, I would say, I'd never be alone."

Along with her social life, Angel's grades were also suffering. The former A student was getting Ds.