Albinism is a genetic condition where the body is unable to produce the melanin pigment responsible for the coloring in skin, hair and eyes.
During her nine-month pregnancy, Faridah Namuwawu had been looking forward to giving birth to her baby. Her husband had been excited, too. However, her joy was cut short after the husband abandoned her after discovering that the baby girl was an albino.
“He said they do not give birth to people with albinism. That was the last time I saw him. I have been raising my daughter, single-handedly,” Namuwawu, a resident of Nabisalu, a slum area in the Ugandan capital Kampala, told Xinhua on Tuesday.
Five years on, Namuwawu’s daughter is now in kindergarten and she struggles to pay her tuition fees besides buying a sunscreen and glasses to protect her.
Namuwawu’s daughter also has to deal with the stigma against albinism in her class.
“It is really a tough job bringing up a child with albinism in Uganda,” said Namuwawu.
Many parents in Uganda are facing a similar situation as Namuwawu, Olive Namutebi, the executive director of Albinism Umbrella, an organization that brings together people with albinism in Uganda, told Xinhua in an interview.
“There is so much stigma in the communities. Parents of children with albinism also fear to send their children to school for fear of being kidnapped by traditional healers for human sacrifice,” Namutebi said.
There is no readily available figure of the total number of albinism in Uganda.
The Ugandan Parliament this week started a fundraising drive to collect funds to set up an albinism center. The center will have a hostel, training and medical facility, according to Jacob Oulanyah, deputy Parliament speaker.
Oulanyah led the fundraising walk on Sunday that brought together legislators, business community, parents and people with albinism.
Rebecca Kadaga, the speaker of Parliament, in June last year requested the ministry of education and sports to prioritize provision of sunscreen for people living with albinism by including it in the 2019/2020 Financial Year budget.
Kadaga said the government should buy sunscreen and glasses for pupils and students with albinism especially those in primary and secondary schools instead of leaving the burden to their parents.
Last year, a beauty pageant was organized for people with albinism with the aim of raising awareness of the rights of people living with albinism and building confidence in them so as to end marginalization.
The competition was held under the theme “Beauty Beyond the Skin”.