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Simon Kiir Makol, a 15-year-old with albinism, lives in the Kakuma refugee camp, Kenya. | © G. Bugoma / HI
In the Kakuma refugee camp, Simon, an energetic and intrepid teenager with albinism, is actively involved in raising awareness among his peers and bringing life to his school.
Simon Kiir Makol, 15, lives in the Kakuma refugee camp in Kenya with his mother and five brothers and sisters. They were all born in the camp, where their mother, Awien Miakol, originally from South Sudan, has lived for over fifteen years
Simon is a cheerful, sociable teenager who loves music and dance, and is very sociable. He has albinism, a genetic condition that causes skin depigmentation and has tangible consequences for his everyday life: Simon is more sensitive to the sun and has visual impairment.
"There are things that affect me, like sunlight. For example, at school, when I have to walk outside and I don't have a cap on, the hot Kakuma sun is really dangerous for my skin."
Simon's older sister also has albinism, and their mother has long been a victim of the judgement of her community, which often sees albinism as a stigma. Because of prejudice and superstition, people with albinism are often mocked, bullied, abused or excluded. As a result, the family has lived in relative isolation and the children have long struggled to find playmates
When Simon and his family met HI, the association's teams organised awareness-raising activities in the community. Thanks to these activities and the exchanges with other residents, Awien now feels better integrated, less judged and more supported by the other families.
To help protect his skin from the Kakuma sun, HI provided Simon with sunscreen cream, a hat and protective clothing. The teenager was also referred to health centres for ophthalmological examinations to improve his visual comfort.
Today, Simon attends classes at the Fuji inclusive primary school in the Kakuma refugee camp, where the environment is adapted to his needs. The young man is very diligent and actively participates in his lessons, determined to continue his education and seize every opportunity that comes his way. For him, who aspires to support his family financially, education is the royal road to an inspiring and lucrative job that will improve the living conditions of his loved ones.
"I feel good at school because HI supports us. The association has enrolled us in clubs and I have been a member of an inclusive rights club which has benefited me, and I am very grateful for that. Coming to school is important to me because in the future I'll be able to support my family and friends.”
Simon is a very dynamic young man, who is very involved in the life of his school and community. With his role as master of ceremonies, which he performs to perfection at celebrations, he is a household name; his performance at the International Refugee Day event organised in Kakuma in June 2023 remains engraved in people's memories. The young man is also very involved with HI, taking part in various activities to raise awareness about albinism.
"I'm very proud of Simon. I'm delighted to see that he's getting good marks and he's integrated well into his school and the community. I have confidence in him and his future," says his mother.
HI works in the Kakuma refugee camp to facilitate access to education for children with disabilities and to increase their opportunities. Through its projects, the organisation has accompanied over 7,100 children, trained 234 teachers in inclusive teaching methods and actively supports 14 pre-primary schools, 21 primary schools and 7 secondary schools.
HI is an independent and impartial aid organisation working in situations of poverty and exclusion, conflict and disaster. We work alongside people with disabilities and vulnerable populations, taking action and bearing witness in order to respond to their essential needs, improve their living conditions and promote respect for their dignity and fundamental rights.
HI is an independent and impartial aid organisation working in situations of poverty and exclusion, conflict and disaster. We work alongside people with disabilities and vulnerable populations, taking action and bearing witness in order to respond to their essential needs, improve their living conditions and promote respect for their dignity and fundamental rights.