Esther was a promising brilliant young girl who died 9 months ago on her way home from the Care Center. Esther used to walk for about 3 hours from her house to the Care Center nearly every day. On that fateful day, it rained so she decided to take a shorter route where she had to walk across Akoyo stream. While walking across the stream, suddenly she had seizures, fell into the stream and drowned. This is so sad ….
I wondered why these children make this incredible journey walking to the Care Center, despite the long distance. I found out that these children are motivated because the center is the only place where most of them feel loved and have the opportunity to share their experiences with their friends, teachers and caretakers who care to listen to them.
Balaam, one of the children at the Care Center has faced a lot of challenges. His mother died when he was barely 3 years old. He has a brother, Justin born of the same mother who also has nodding syndrome. Balaam’s father, Mr Okello Charles starved Balaam because he believed Balaam was wasting his food. He said Balaam’s life was being prolonged unnecessarily by the Hope for Humans Care Center and that they should leave him to die so that he can bury Balaam and forget about him. He built a hut for Balaam and Justin, separated their plates, cutleries and clothing and prevented them from eating and interacting with other members of the family.
Recently, Balaam was ill and had to go to the hospital. I was surprised when I saw Balaam’s father carrying Balaam in his arms so passionately at the hospital. He prepared Balaam’s food, made his bed and washed his clothes. I was so stunned that I had to ask him during an interview ,what caused the dramatic change .He told me that he has noticed a lot of improvement in Balaam’s health since he’s being managed at the Care Center. He said Balaam was unable to walk or do anything but now he walks , lays his bed and does some house chores with Justin, which makes him happy.
I’m so glad that Balaam’s father now loves Balaam and Justin so dearly. However there are many more parents in the community who still discriminate against the children with nodding syndrome. Some people believe the disease is contagious. Speaking with Dr David Kitara, a well-known researcher on nodding syndrome and a professor of Surgery at Gulu University, Uganda, he stressed that nodding syndrome cannot spread from one person to another. Also, he emphasized that the community should embrace the children with nodding syndrome rather than discriminate against them. “A child with nodding syndrome can be rehabilitated to live a life near normal” he said.
These are few of the challenges the Odek community in Northern Uganda faces.
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