Speech by Julia Thorberg, December 2024

This is Sylvia, a young girl with albinism living in Tanzania. She stays at a home run by a woman named Martha and only occasionally visits her family. Maybe you wonder why? That’s what I’m here to share with you.

My name is Julia, and I’m a member of an organization called Albinism Awareness. For the past four years, I’ve been deeply committed to supporting their work. We help Martha provide safety, health, and hope to children like Sylvia. By the end of my talk, you’ll understand why one woman has become the most important person for children with albinism in Tanzania.

Albinism is caused by a genetic mutation that results in little or no melanin in the skin, hair, and eyes. Without melanin, their skin is highly vulnerable to the sun’s harmful rays. In Tanzania, where the sun is intense year-round, 80% of people with albinism die before their 30th birthday, and fewer than 2% live past 40.

To put this into perspective: imagine our class of 40 students. By age 30, only 8 of us would still be alive. By 40, just one.

Martha, with help from Albinism Awareness, ensures these children have what they need to protect themselves—clothing, sunscreen, and education about sun safety. She’s giving children like Silvia a real chance at a longer, healthier life.

Even with these health risks, life for children with albinism in Tanzania is far more dangerous due to myths that began spreading in 2006. One such myth claims that albino body parts can bring wealth. This myth has led to horrifying attacks, abductions, and murders.

In June this year, a 2-year-old girl with albinism was brutally killed, her body parts taken. A baby.

This is my daughter last year when she was two. Imagining her as the victim hits me deeply. That 2-year-old girl in Tanzania was just as small, just as innocent.

Silvia could have faced the same fate. One night while visiting her family, a group of men on motorcycles came looking for “the white girl.” They brought a large box—likely intended for her. Silvia hid under a bed all night, terrified.

Thanks to Martha, Sylvia now has a safe place to live. Martha opens her home to children like her, providing not only safety but a sense of belonging. With support from Albinism Awareness, she currently cares for about 30 children, protecting them from the unimaginable dangers they face.

Safety and health are essential, but without education, these children have little chance of escaping poverty. Less than half of children with albinism in Tanzania complete primary school. Some parents don’t see the point in sending them, believing they won’t live long enough for education to matter. Others assume they are mentally incapable of learning.

Even when they attend school, the journey can be dangerous. One boy with albinism was attacked on his way to school. His arm was severed by machete-wielding attackers. Thankfully, his family heard him scream and was able to save him, but others aren’t so lucky.

Without education, many children are forced to work in the fields under the scorching sun, further risking their lives. But Martha is changing that. She secures spots in boarding schools, ensuring the children have safe transportation, uniforms, supplies, and even bedding.

Martha also educates teachers and students about albinism, helping the children be accepted and integrated into the school environment. These efforts give them not just an education but a future—a chance to work indoors, away from the sun, and build a life of independence.

Because of Martha, children like Sylvia have a chance at a better life. They can live beyond 30, receive an education, and grow up feeling safe and valued.

Most importantly, they have a chance to simply live.

And that is why one woman has become the most important person for children with albinism in Tanzania.