Agatha’s story

Apolot Agatha was born 28 years ago to Francis Okurut and deceased mother. She is the fourth born of 6. She went to school just like any other typical child from outskirts of Soroti town. During her fourth year in high school, she contracted a strange disease. The father, a former secondary school teacher says “Her colleagues used to tell me that Agatha had fallen down and had convulsions”. Just like that her condition worsened. Presently she can barely do anything on her own. She is fed, dressed and bathed. She can hear but cannot talk. She is jolly and loves people. When you call out her name, she answers back with a full beautiful smile.

Agatha is suffering from ataxia a degenerative disease of the nervous system caused due to damage of the cerebellum the part of the brain responsible for coordinating movement. She lacks coordination, slurred speech, trouble eating and swallowing, difficulty walking, gait abnormalities, eye movement abnormalities and tremors as well. According to research, this condition is sometimes hereditary. The father claims it was inherited from the maternal side. The mother could also have died from the same condition.

Recently she was diagnosed with dystonia a movement disorder in which a person’s muscle contract uncontrollably and acute urine retention (the inability to voluntarily pass urine).

Her condition is not any different from her elder brothers Vincent and Joseph. These unfortunately passed. They were all still school when they started convulsing. The father claims the eldest was about to finish his diploma in electrical engineering. The other was still in high school. Vincent passed in 2018 and Joseph just recently. This has greatly affected Agatha evidently. She needs people around her all the time who make her smile. It’s evident when she sees someone she likes her face beams and if you do something good she gestures a thank you.

Unfortunately, the father believes that this is spiritual and witchcraft from the children’s maternal uncles. She claims the mother also died due to witchcraft. He believes the only way to help Agatha is through prayer. Maybe he is right, but how about medical doctor’s treatment? I believe her symptoms could be managed medically. To this, he has no answer.

Their father is apparently traumatized and hardened soul you can tell from his tone. I got to learn that 2 more of Agatha’s siblings are also terminally sick. One is HIV positive, the other has a mental disorder. He went ahead and married another woman when Agatha’s mom passed on, the children are okay for now.

Apart from accommodation, Agatha needs transport to Kiruddu her next appointment is due on 28/08/19. She needs food to keep her energy going. She needs clothes and adult diapers. She is a very clean girl though, she cannot pee on the bed. Most importantly she needs a ray of sunshine, assuring smiles and hugs.

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