Carrying the cross of 10 albino children
Sep 08, 2014
When people think about raising a family, all they pray for is having healthy babies.
When people think about raising a family, all they pray for is having healthy babies. Never do they think their child might be a sample for statistics in albinism. But, for these two couples in Ngole village, Buyende district, that is the hand fate dealt them. Tom Gwebayanga brings you their story.
Forty-year-old Idi Gyesibye and Bernard Mwanje who live in Ngole village, Buyende district, narrate how mischief unfolded and turned their homes into tourist destinations, amid the challenges of bringing up albino children, moreover in a rural setting.
Gwesibye gets married
Gwesibye gets married In 1996, Gyesibye fell in love with Jalia Namukoma, a village beauty with a nice, brown complexion that always turned men’s heads. The daughter of Haruna Magino and Fatuma Takali of Ngole village, Kagulu sub-county in Buyende district, had dropped out of school in Primary Five for lack of school fees.
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Buyende Woman MP, Veronica Kadogo ( in purple gomesi) and Buyende RDC Nasser Munuulo posing for a photograph with Jaliya Namukoma and her children.
Gyesibye, a peasant farmer and fisherman, came from a poor family but his dreams of having a beautiful family had finally arrived. Within months, Namukoma conceived.
Their first child
Nothing prepared them for what would happen: Namukoma gave birth to an albino baby girl.
“We were bewildered. It took months for us to recover from the shock,” says Namukoma. “I had reached the extent of refusing to breastfeed the baby, thinking it was a spirit,” she adds.
Gyesibye loved the baby and got all the emotional support he needed from his parents and other people in the village. Needless to say, there were those who came to their home to gawk at baby Kamiyat Nalumansi. She was the first albino born in that village. But that was nothing compared to what else lay in store for them. The couple had six children, four of whom are albinos. The youngest is two years old. The couple, though, has two ‘normal’ children — Idi Gyesibye, 7 and Lukia Namukaaya, 5.
The albinos are Nalumansi, 15; Hussein Makumbi, 14; Siyama Malita, 12; Joweri Solome, 10 and Janat Namukoma, two. “At first, I thought of abandoning them and going into hiding or marrying another man, but I dropped the idea after being counselled,” Namukoma confesses.
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Namukoma with her children
Gyesibye flees
But Gyesibye could not take it anymore. He fled to Lango subregion where he reportedly married another woman in the hope of getting “normal children”. He has two children with his new wife. But Gyesibye does not seem to have left Namukoma for good, he visits her regularly. She is seven months pregnant with his child.
Besides her own children, she is caring for the child of their eldest daughter, Nalumansi, who was defiled and impregnated by a young man from the neighbourhood. He has denied responsibility. “We asked him to marry her and he threatened to commit suicide. He said he did not want to marry an albino,” says Dorothy Mpandi, Nalumansi’s grandmother.
Nalumansi dropped out of school in P3 when Namukoma failed to raise 3kg of maize and sh2,500 per term for lunch.
trueKamiyat Nalumansi and her baby
Second couple with albinism
Two kilometres from Namukoma’s home, another couple, Bernard Mwanje, 37 and Florence Nabukenya, 32, also have five albino children, the youngest being nine months old.
The children wear green hats to shield their eyes and skin from the harsh rays of the sun. They strut about in gumboots to protect their fragile feet from damage. The hats and boots were gifts from the Source of the Nile Union of Persons with Albinism, a Jinja-based NGO that advocates the rights of albinos.
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Mwanje and his children posing for a group photograph
“You are welcome to see our bazungu (white people),” Mwanje says. Mwanje and Nabukenya met in 1999 at Kiyindi landing site in Mukono district. Their first children, Mary Nakavuma, 14 and Vincent Lubowa, 11, have a normal skin pigmentation. They were followed by five albinos — Robert Semujju, eight; Julius Senabulya, six; Benard Mwanje, four; Tanansi Sekirinya, two-and-a-half; and Teddy Nabulya, nine months.
In 2009, the Mwanjes got twins, one of them an albino, but both died two months later. Mwanje says the biggest challenge in raising them is not education, but kidnappers, who think they can become rich after sacrificing albinos.
“Semujju was going to school, but we stopped him after kidnappers waylaid him thrice,” says Mwanje. Once, at home, two strange men tried to grab one of the children. Luckily, the family saw them and raised an alarm. The men fled. Mwanje says the threat to his childrens lives has made him stay at home almost all the time, hence he cannot adequately provide for his family.
Besides the insecurity, their skins are delicate and need a special lotion. Each tube goes for sh15,000. Unlike Gyesibya, Mwanje stands by his children.“They are a gift from God. I can neither deny them nor run away. I am, however, worried that they are not getting basic education,” he says.
The Woman MP for Buyende, Veronica Kadogo, who visited the family, says: “This is a trying situation for them, which entails moral, technical and financial intervention.” However, she expresses her concern about the spacing in the children’s ages.
“The children are almost the same age. The couple should start using family planning,” she says, adding: “As leaders, we can offer the initial support to these families, but there is need to source more support.” The other challenge is basic education for the children because they need to study. The long distance to school, amid fears of kidnap and lack of utilities are the main challenges.
Albinos under PWDs
Peter Ogik, the chairperson of the Source of the Nile Union of Persons with Albinism, says albinos are classified as persons with disabilities (PWDs).
He says albinos are faced with challenges, including marginalisation and other human rights abuses. Though we are categorised as PWDs in the Ministry of Gender, we do not feature anywhere in the national budget.
Ogik adds that albinos are isolated, and sometimes denied justice, especially when they are defiled. Ogik says this, among other reasons, is why they formed the organisation.
“We petitioned Parliament for a tax waiver on our lotions from Tanzania, but no action has been taken. We are also processing a document, urging the Government to allow us to have a representative in Parliament.
Faziira Kawuma, the resource person of the Source of the Nile Union of Persons with Albinism, says the number of albinos has soared and it is, therefore, prudent that the Government and non-governmental organisations help them.
Myths about albinism
Busoga folklore has it that albinos were regarded as messengers of the “disastrous” spirit called “Lubaale”, which would bless or curse, depending on whether one offended or
pleased them.
Keefa Gumula, a resident of Bumogoli in Buyende, says whoever laughs at albino, gives birth to an albino. Gumula says a story is told of a girl who molested an albino who was seeking shelter in her house from rain. She called him lubaale, and he cursed her saying: “You will beget 10 albinos when you grow up,” and according to folklore, it happened. It is said she produced 10 albino children in a span of 12 years.
Peter Ogik, the chairperson of the Source of the Nile Union of Persons with Albinism, says in the past, whenever an albino died, the bereaved family neither announced the death nor held a wake.
Albinos were buried at night in a forest in unmarked graves, a practice that made many assume that albinos never died, but simply vanished. However, Robert Serwano, the LC1 chairman for Nabbuku zone, Kagulu subcounty, Buyende, says it is also believed that albinos are givers of fortune and that a handshake with one attracts blessings and wealth.
This belief has endangered them. Ogik says albinos are hunted for their body parts in many parts of Africa.
In Uganda, witchdoctors use their hair and fingernails as additives in concocting charms for love and wealth. There is also a belief that having sex with them makes one wealthy. This, unfortunately, has exposed them to defilers.
Ogik says local leaders and the Police do not do enough to help them get justice. “I have never heard of albino defilement cases being handled. They think we are not human and deny us our rights,” he says.
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Causes of albinism and how to mitigate its health effects
By Tom Gwebayanga
What is albinism?
Albinism refers to a deficiency in melamine that results in little or no colour (pigment) in the skin, hair, and eyes.
Causes
According to Dr. Tomas Suubi of Suubi ParaMedical Clinic in Mateete, Sembabule district, albinism occurs when one of several genetic defects makes the body unable to produce or distribute melanin, a natural substance that gives colour to your hair, skin and iris of the eye. The defects may be genetic.
Suubi adds that the most severe form of albinism is called oculocutaneous albinism. People with this type of albinism have white or pink hair and skin, as well as problems with their vision. Another type of albinism, called ocular albinism type 1 (OA1), affects the eyes only.
The person's skin and eye colours are usually in the normal range. However, an eye exam will show that there is no colouring in the back of the eye (retina).
Symptoms
A person with albinism will have one of the following symptoms:
Absence of colour in the hair, skin, or iris of the eye Light skin and hair nPatchy, missing skin colour Crossed eyes (strabismus) Light sensitivity (photophobia) Rapid eye movements (nystagmus) Vision problems, or functional (blindness)
Treatment
The goal of treatment is to relieve symptoms. It depends on the severity.
Treatment involves protecting the skin and eyes from the sun.
Reduce sunburn risk by avoiding the sun, using sunscreen, and covering up completely with clothing when exposed to the sun.
Sunscreen should have a high sun protection factor.
Sunglasses (UV protected) may relieve light sensitivity
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