"I didn't used to worry at all," Charles says. "But since the day my daughter was told,
even if she runs, one day they will get hold of her, we are extremely careful."
Charles says the biggest challenge is not the threat of poachers but the everyday hurdles
of parenting a child with albinism.
Although neither she nor her husband has the condition, both of their children do.
Because albinism is caused by two recessive genes, it is seen in higher numbers in
societies that are isolated or in countries where there is intermarriage. In many African
countries, the rate of albinism is about 1 in 3,000, compared to roughly 1 in 17,000 in the
United States.
Joyce has a 5-year-old brother, Peter, who, like most little boys, loves to run around and
play outside in the hot African sun. But for Peter, an innocent game of soccer has lasting
consequences. For people with albinism, the sun is the enemy, a hard concept for a
rambunctious child to grasp.
"When I am around, I can make him stay in for a few minutes," his mother says.
"But I have a job, which makes me come back at home around four or five in the
evenings. The house help has her own chores and thus cannot always keep watch of
[Peter], who is extremely naughty. As a result he has some burns on his face."
Both children are supposed to wear long sleeves and hats whenever they go outside, but
Charles says that, too, is almost impossible to enforce. Joyce, as she has gotten older, will
sometimes refuse to wear long sleeves or a hat. And Peter is outright rebellious about it.
"I have bought him lots of hats, but you always have to insist that he wears his hat," she
says. "At times he does not feel like wearing it, and you will see him running off without
it. He actually doesn't like to wear the hat; you have to force him to do so."
In Tanzania, sunscreen is extremely expensive, even for a middle-class family like the
Charleses. In an effort to acknowledge albinism in the country, the ministry of health
provides some sunscreen to people who register with the Tanzanian Albino Society, a
nonprofit advocacy group. But Charles says more needs to be done.
"The government promises to bring us lotions that would help the kids protect their skin
and, when they bring them, they are not enough and people end up not getting them," she
says.
She says her children are well-liked and have not faced discrimination in the
neighborhood or at school. But they sometimes forget that there are many "normal"
children's activities in Tanzania that they cannot do, she says. And she worries about the
increasing violence against people with albinism, a term rooted in the latin word meaning
"white."

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