Albinism Children Home: Chasing the Sunlight

Abinism Children's Home is a public service platform designed to help and support albinos and their families living in China. The organization's main goal is to improve living standards and promote equal participation in society for albinos. 

When we first met Guanlu in Xi’an, the only difference between us was our skin and hair colors. As the founder and director of the Albinism "Moon" Children Home, he was terribly busy. Established in 2008, the organization has passed the registration as a private non-profit organization. Since then, the Moon Children Home has helped more albino patients gain greater courage and confidence.

Guan Lu is the founder of the Moon Children Home

Impaired vision may be unfamiliar to most of people, but it is quite different from blindness. However, due to the shortage in educational resources for students with impaired vision, children with albinism are often sent to schools for the blind, where they learn Braille. “When they attend the school for the blind, they are reading the Braille instead of touching them.” Guanlu said, “There is no difference between dimness and clarity in our eyes. Things are clear for us, but they appear much smaller than in normal eyes. That makes it difficult for us to identify characters on the bus station boards”

For these situations, the Moon Children Home provides albinistic children with aid appliances, which enlarge the written words that they read. 

The biggest challenge for people with albinism in their daily lives is posed by the sun. They are sensitive to sunlight as a result of the pigment loss. And, the most pressure comes from the patients’ psychological status. Many dye hair to reduce the difference between themselves and the rest of society. Many albino patients also seldom choose to communicate with people face to face. They usually gather in the chat room or forum online.

Albinism is not a disease that can be healed by an operation or a period of treatment. Rather, it is a life-long print for a patient. They need social understanding and inclusion more than medical treatment. What they need is to accept themselves as they are. The organization has developed a platform that provides help, encouragement, and support to albinistic children.

To help albinism patients and their families adjust better to the society, Moon Children holds advocacy events all over the country. It also actively seeks more resources to provide support for the patients and their families.

Apart from the routine activities, Guanlu and his colleagues have started another challenging job: setting up a national file system for people with albinism to serve those who cannot access the internet. There is no internet at some developing areas, so they know nothing about the Moon Children Home. If a child suffered from albinism, he/she would have to stay home all his/her life, never getting to go out and meet people. 

A multitasker, Guanlu is making a difference for people with albinism all across the country. He has a healthy daughter and a happy family. 

Original article written by Cuiyan Hu, translated by Maggie Li, edited by Yanyan Zhang

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Moon Children Home provides children with aid appliance, which enlarges written words so that they could read them.

Guanlu has a healthy daughter and a happy family