Icyimpaye with Umutoniwase, her first daughter born with albinism

 

Icyimpaye Riziki, 37, is a mother of nine children, including three born with albinism. She lives with her family in Kigali, the capital of Rwanda.

She is among 20 people trained to make liquid soap through a project of the Organization for the Integration and Promotion of People with Albinism (OIPPA), with financial support from United Nations Development Programme (UNDP) in Rwanda.

The training changed her life and the lives of her children—from being outcasts in their own family to being respected members of the community.

Icyimpaye agreed to share the story of her life after giving birth to a child with albinism, in a society that still stigmatises and discriminates against people with albinism.

Once happily married, Icyimpaye’s life changed in 2002 when she gave birth to her baby girl Umutoniwase, who was born with albinism. In the months and years that followed, Icyimpaye suffered a constant barrage of insults and mistreatment.

“This is a curse.” “You have given birth to an animal, not a child.” These were some of the words that spoken by her husband and other family members who did not understand albinism and were shocked to receive a first child with albinism.

Icyimpaye’s husband stopped caring for the family. “My children and I lived a miserable life because my husband abused me verbally and physically and accused me of prostitution considering the fact that where I come from no one else has children with albinism,” she explains.

Things got worse after she gave birth to two more babies with albinism. “My husband treated me as a prostitute. My fellow church believers rejected me saying I was possessed and gave birth to devils,” she recalls.    

Icyimpaye and her children went through hard times of hunger and sickness. There were days they could not afford even one meal, and depended on their neighbours for help. Nor could she afford to pay health insurance for herself and her nine children.

The children with albinism faced many health challenges as their skin was highly vulnerable to the damaging rays of the sun. Icyimpaye did not have enough money to buy them protective clothing such as hats and long sleeve shirts or T-shirts.

“When I looked at their damaged skin, I felt very sad that I could not meet the basic needs for skin protection. I heard about sunscreen lotion, but I did not have enough income to buy it,” she deplores.

She stood up alone against all odds and worked hard to take care of her children.

Icyimpaye gained hope for her children’s future in July 2019, when she was selected by OIPPA to participate in a one-month training workshop in vocational and entrepreneurship skills. It was there that she learned how to make and market liquid soap.

After the training, Icyimpaye started producing and selling liquid soap to village residents. She continued to expand her business to supply other villages and local markets.

Today, her family can afford two meals a day. She has money to provide her children with appropriate clothing and sunscreen lotion. Her three children with albinism have been progressively accepted by the neighbourhood and they now attend school regularly.

The husband also regards his wife with renewed respect. “My husband no longer treats me as a worthless wife because I contribute to catering for the family,” she says.

“I can now sleep peacefully and have happy dreams,” she says. 

The project trained more than 150 parents and persons with albinism on how to protect the rights of persons with albinism. Parents of children with albinism also learned about their own rights. They shared experiences and challenges that they have faced in raising children with albinism.

“I learned that Albinism is caused by both parents who have the albino genes. I also learned that children with albinism are human beings like others and have rights like other people,” Icyimpaye said.

The project provided 30 households with small livestock such as pigs and goats to improve the livelihood and nutrition conditions of their family members. More than 100 persons with albinism were tested for skin cancer, and 150 were provided with sunscreen lotion.

Icyimpaye never gave up. She persevered through the most difficult of times. But it was only with the support of OIPPA and UNDP Rwanda that she was able to change her circumstances.

Many others who care for children with disabilities, or who live with disabilities themselves, still face enormous obstacles in their day-to-day lives. Icyimpaye’s story should be a call for community members, government officials and development partners to scale up efforts to meet and protect the rights of persons with disabilities and ensure no one is left behind.   

 

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