Soroti family grapples with burden of disability

Ojwiny Village in Merok Parish, Katine Sub-county in Soroti District is home to a family of nine. All of the family members, with the exception of one child, have some form of disability.

The disabilities stretch across three generations of the ill-fated family.

Mr Michael Ekoyu, 26, one of the family members, who has physical disabilities on his legs and arms, says he and his siblings were born to parents with disabilities.

“My late father Robert Ongel was disabled and so is my mother, Ms Margaret Apio,”  Mr Ekoyu says.

Mr Ekoyu adds: “Our disabled parents gave birth to seven of us, besides the three of us who are living with disabilities, two of the four late brothers were also disabled and now one of my two children is also disabled.”

Mr Ekoyu thinks the disability is hereditary.  “I think it is in the blood because it is manifesting in our descendants,” Mr Ekoyu says.

He adds that despite the fact that they were born with disabilities and he has a disabled child, he is grateful to God for the gift of life.

“God knows the reason as to why he created us like this,” Mr Ekoyu says.

Breadwinner

Despite his state, Mr Ekoyu is the breadwinner of his children, siblings, and his 58-year-old mother, who is forced to crawl from one place to another because of her debilitating disabilities.

His younger brother, Mr Julius Eyangu, can walk but with difficulty, however, his sister Ms Judith Adiao can neither walk nor do any work because she has no supportive limbs.

Ms Adiao says they have not benefited from government programmes geared towards helping people with disabilities.

“Every day that dawns is a struggle for us, we were born disabled and now the same state of disability is being passed to the third generation, whatever it means, we just don’t know,” she says.

Mr Moses Emugu Eroju, the chairperson of Katine sub-county, says the vulnerable family requires support from the government, non-government organisations and other well-wishers.

“Life for this family is a struggle, accessing water and other basics in life is a nightmare,” he says.

Mr Eroju adds that the nearest water point to the family’s home is 1.5kms away, while the nearest health centre is 12kms away.

Ms Apio says she fell in love with her late husband, Robert Ongel, and got married to him because of the societal segregation against persons with disabilities.

“There was no able-bodied person who looked at me as a wife. When we offered to love each other as disabled persons, we got engaged and married,’’ she said.

Ms Apio adds: “Despite having disabilities, we harboured the belief that our children would not be disabled, unfortunately, it has not been the case. As disabled parents, we remained helpless, because even the children we gave birth to turned out to be disabled.”

Medical explanation

Dr Alfred Anyonga, the officer-in-charge of Princess Diana Health Centre IV, says the family may be having a dominant genetic defect that prevents the normal formation of either the bones, nerves or muscles.

Dr John Ekure of Kumi orthopedic Centre acknowledged that some disabilities can be passed on genetically to children.

“In case of the parents carrying a dominant gene defect responsible for causing disability, there are high chances they could also produce children who are disabled,” Dr Etolu says.

He urges members of the ill-fated family to always marry able-bodied people so as to reduce the chances of producing children with disabilities.

“It is usually better to go for genetic counselling or tests before marriage to ensure that you don’t unite with a partner with a similar problem,” Mr Ekure says.

 He further says other disabilities can be caused by trauma, infections and in severe injuries caused by accidents that distort the normal alignment of the nerves.

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