Albinism: Caught Between Dark and Light

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

ByABC News
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?'"

Much like Angel, Forrest changed schools numerous times before enrolling at the private New York Institute for Special Education in the Bronx, where she met her sixth-grade teacher, Melissa Reed -- also an African-American with albinism -- who says the future model was a shy, quiet child -- too afraid to speak up.

"I said to Diandra, 'In my class you don't have to whisper. Don't worry. I won't bite.' And I was determined to make school a place where learning is fun," Reed said.

It was the start of Forrest's metamorphosis, in which her inner beauty came to match her outer beauty and she transformed from a shy girl into an outgoing and sometimes outspoken woman.

This summer, Forrest traveled to France to walk the runways during Paris fashion week. It was her first trip outside the country and the fulfillment of a lifetime dream. She's now signed with prestigious Ford Models in Paris.