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Natikyo's story

Thursday, 8 June, 2017

Nakityo and her five children live in Luwero District, about 25km north of Kampala in the central region of Uganda. Nakityo has very limited vision. Three of her children - Robert (7 Years old), Dalton (4 Years old), and Luwle (2 Years old) - are deafblind. She also has two other daughters, Nakiganda Agnes and Nannozi Salome, who do not have a disability. Rubella (German measles) is a possible cause of deafblindness in Uganda. Despite a vaccine being available since the 1970s, it has not yet been introduced into the national routine immunisation programme.

When Nakityo’s eldest son Robert was born deaf and partially blind, as has been a familiar scenario for many mothers of children with deafblindness in East Africa, his father left. In these cases, the mother is left alone and is stigmatised – common local belief dictates that it is her fault. When Robert’s father learned that his sone was born with a disability, he did not want to look after the child, leaving Nakityo with Robert. Without any support from the father’s side of the family, Nakityo had to return to Robert’s grandmother for support.

Staying close to her in-laws was not easy…

Mother helping young boy put toothpaste on toothbrush

Boy

The family of Robert’s father chased her away and would instruct other children to beat Robert. At one point, Robert required medical attention after they threw a stone at his better eye. Nakityo was supported by SI Uganda Programme Officer, Alice, who made the necessary contacts to take Robert to Mengo Hospital to be assisted. Upon arrival at the hospital, at first they did not want to help, saying “What use is this boy?”

Mother and young boy holding pineapple

For a while, Nakityo was desperate and even thought about death. She carried poison with her and continually thought about taking it. The single thing preventing her from suicide was her children, and not knowing who would look after them if she was not there.

Nakityo said:

“Life was difficult for me, if I was to die who would look after my children? I thought it would be better to go with poison and kill ourselves. After some time I was not thinking about death anymore, but life ahead, the future of my children.

If the children went to school and got educated I would be a proud mother. As much as life is not easy, I work on a farm and sell charcoal – it is small money but at least I know life can improve”

Sense International began supporting Nakityo and her family in 2014, when the Community Based Education programme started. This has involved visits by Alice and the local mainstream teacher Enid. Both have been crucial in re-installing hope into Nakityo and her family’s life.

Young boy holding baby on his back

Alice has advised on communication methods and Enid has used the Community Based Education curriculum and tactile play materials to teach Nakityo’s children. Robert continues to develop and is supported by a mainstream/SNE teacher who visits once a week for three to four hours.

The SI Uganda team are also currently working on trying to support Robert’s enrolment in a local school as he is a very curious and gifted boy who deserves access to education. To better support the children’s educational development, SI Uganda has also distributed sensory stimulation toys (see Image 1) such as a xylophone and colourful toys which require construction and the recognition of different shapes.

Nakityo no longer thinks about death, but about the future. When Alice asked her who her hero was, she said her mother. Alice responded by saying that Nakityo is their hero here. From a period of despair and depression for Nakityo, she is now looking to a future of hope for her and her 5 children.

When asked what her dreams were for her children Nakityo said:

“Robert will be a mechanic as he is always making or fixing things. Nachiganda Hope will be a nurse as she takes care of the other children.

Florence will probably become a lawyer, as she always argues you out of everything! I need more time to interact with Dalton to know what he might do; I am still watching this space. I would like Luwle to be a teacher as teachers did not let him come into class because of his disability”

First published: Friday 7 June 2013
Last updated: Wednesday 20 September 2017