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Kin endure challenges as they raise children with albinism

COUNTIES
By Sophiah Muthoni | June 15th 2016
Kennedy Mabeya, 31, and his wife Barbara Otieno, 26, with their child at an event to mark World Albinism Day in Nairobi yesterday. The couple has endured taunting comments after their child was born with albinism yet the geneology of their family has no such condition. (PHOTO: DAVID NJAAGA/ STANDARD)

A couple has endured taunting comments after their child was born with albinism yet the genealogy of their family has no such condition.

Barbara Otieno, 26, and Kennedy Mabeya, 31, have had to contend with challenges since the birth of their one-year-old son, Theo Christopher Mabeya.

The two, who joined other Kenyans to celebrate the International Albinism Awareness Day on Monday, narrated that getting a child with albinism came as a shock to both of them.

"None of us have albinism and no one in either side of our family has albinism. So we really did not see this coming. I remember we frequented the hospital quite a lot after he was born because we did not have information on the condition," said Babra.

They explained that even the health practitioners had little or no information on the condition. One nurse even suggested the child's pigmentation would be established as he grew.

"We have had immense support from family and friends but we feel there should be more information available at the hospital level to new parents who get babies with albinism. There needs to be more awareness," said Mabeya.

Barbara pointed out raising a child with albinism requires patience, especially because of people's curiosity.

She explained: "Children in our neighbourhood would flock every time I took Theo out and they would call him 'Mzungu'. But we explained his condition and made them understand that he is just like them and to refer to him by his name."

Some of the taunting comments she has had to endure include someone telling her to breastfeed her son in a matatu just to prove parentage.

The story is similar to that of Rachel Muyera, a mother of four from Lamu County whose last-born was born with albinism.

"When he was born, I could see the shock on the doctor's face and I wondered what was wrong. I was also shocked when I saw the baby. None of my other children have albinism," she said.

She pointed out despite the stares, curious questions and taunting comments from people in the community, she has learnt to accept her three-year-old son.

"My family has accepted my son. He is our blessing despite what other people may think. One woman even asked me why I kept the baby or brought him home from the hospital when he was born," she said.

She is grateful for the Government's programmes for people with albinism and hopes more can be done.

"I am happy the Government provides us with sunscreen but I have to travel so far to get it. One of my biggest challenges is getting protective clothing such as hats for my son," she said.

For Florence Kisombe, 22, living with albinism required courage.

She pointed out that she has had to live with people calling her derogatory names.

As Kenya marked the second International Albinism Awareness Day, one desire people living with albinism have is to live their lives without discrimination or fear.

They also want more awareness to be created around the condition.

And speaking at the Kenyatta International Convention Centre during the occasion, Social Security and Services Principal Secretary Susan Mochache said Kenya was pioneering in support for albinism and  protection of their rights.

"The Government has started different programmes to support people living with albinism through the National Council of People with Disability. Some of these programmes include providing sunscreen lotions, lip care products, after-sun lotions, protective clothing, and easier access to eye-care products," she said.

Ms Mochache said the Government was planning to devolve some of the services such as eye care and screening to the counties.

She also encouraged people living with albinism to live without fear since the Government was keen to protect them.

"The Government will not hesitate to punish those killing and maiming people living with albinism," she said.

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