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Omoro District in Drive to Revive Nodding Syndrome Care Center

Hope for Humans, the first comprehensive Care Center for sufferers of Nodding Syndrome was established in 2012. It became a safe haven where children with nodding syndrome received medical care, rehabilitation, nutritious meals, special education, and personal hygiene support.
Nodding Children Vision Board

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Omoro District Nodding Syndrome Taskforce has started a drive to reopen the defunct Hope for Humans, a care centre in Odek Sub County, four months after it closed down.

Hope for Humans, the first comprehensive Care Center for sufferers of Nodding Syndrome was established in 2012. It became a safe haven where children with nodding syndrome received medical care, rehabilitation, nutritious meals, special education, and personal hygiene support.

Close to three hundred children received specialized care, treatment and rehabilitation through the centre. Many of them were reintegrated into the communities. This however ended last year when the centre's lone funder, Neurologist Dr Suzan Gazda from San Antonio, Texas, terminated funding to the centre.

In an email, first sent out in July 2017, Dr Gazda said that that board of directors had made a ‘difficult decision' to dissolve the organisation and transition the children into the care of Ugandan government. The funding estimated above 80 million Shillings a month, ended in December 2017.

The centre closed down as a result of the funding shortfall, increasing the pain and fear among communities in the region whose only hope for support had ended with Dr Gazda's announcement. Since its closure, the task force has registered the death of two children from their homes while several others have relapsed into frequent seizures due to the absence of treatment, nutritional food supplements and changes in weather.

Douglas Peter Okello, the chairperson of Omoro District Nodding Syndrome Task Force says the district has proposed a monthly budget of 20 million Shillings for the immediate re-opening of the care centre to rescue lives of the severe clients relapsing in communities without treatment.

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Okello told URN that Omoro district council wants the centre re-opened and transformed into an integrated Special Needs Education Center and gazetted as Health Centre III with budgetary support from the Ministries of education and health respectively.

He says since the proposed monthly 20 million shillings contribution is too little to procure adequate medicines and other medical supplies to re-open the care centre, the funds will initially go towards supporting operational cost including procuring food for the most severe children.

According to the taskforce, operations of the centre practically demonstrated hope for complete health recovery of the nodding syndrome sufferers in the region.

Some of the sufferers who were introduced to vocational skills required for today's job markets have become celebrated tailors after graduating from St. Monica Girls Tailoring School in Gulu Town. Another set of 32 treated and rehabilitated children went back to schools to pursue formal education after regaining fractions of their cognitive abilities.

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The Ministry of Health says it stopped funding nodding syndrome activities after districts failed to account for quarterly disbursement to them.

The World Health Organization says nodding syndrome (NS) is a neurological condition with unknown aetiology first documented in the United Republic of Tanzania (URT) in the 1960s, then later in the Republic of South Sudan in the 1990s and in northern Uganda in 2007.

It says nodding syndrome typically affects children between the ages of 5 and 15 years old, causing progressive cognitive dysfunction, neurological deterioration, stunted growth and a characteristic nodding of the head. Despite numerous and extensive investigations in all three countries, very little is known about the cause of the disease.

Uganda Radio Network visited the defunct care centre and found residents fetching water from its compound covered in layers of livestock waste. All offices remain under lock and key.

Before it closed down, the care centre generated additional income from a piggery project in which large whites were raised. The block which housed the project has since been vandalized by unknown people.

Francis Oryema, a neighbour to this centre says while the affected children were still here, sounds of drum beats and music could be heard from his home located some two kilometres away. Today, the musical therapy has gone silent and all the drums are gathering dust behind a closed door in the Care Centre's general store.

But one thing the managers could not hide is the vision board of the children on which surface the children left different paintings depicting their dreams and visions in different colours, orange, green, red and brown.

The board stands in between stances of latrines belonging to the girls on the East and the boys to the West. Paintings of healthy and well-nourished children washing their hands after visiting the toilets ingrained on each of the stances while the vision board is filled up with palm prints of different ages. 

Paintings of dream cars and that of a healthy community in which children happily play soccer, skip over ropes and ride on children's bicycles cover the place. In the same place are paintings of passenger planes taking off. 

Statistics of Nodding Syndrome In Northern Uganda.

Nodding syndrome was first reported in Omoro district on March 12, 2012, from Aromo Wang Lobo village in Lamola Parish, Odek Sub County. Statistics from the district health department says 18 children have succumbed to the disease which has affected 254 children.

In neighbouring Pader district, Nodding syndrome has affected 2,247 most of whom are boys. Anna Apio, Pader district health officer says 1,391 of the affected children are epileptic while 321 presented with both nodding syndrome and epilepsy.

"Approximately 1,850 have fully recovered to a level of being self-reliant requiring little or no additional support from their families. Some are at school while others are stable at home. About 220 patients need their family support in taking medication, putting food in front of them as well as bathing while 177 are totally dependent on their family support because they cannot do anything on their own" she stated. 

While Omoro district has only received 12 Million shillings towards Nodding Syndrome, Pader district has received 84,934,500 Million shillings in 2015 and 2016 towards nodding syndrome from the ministry of health. 

 The strange condition has also been diagnosed in Kitgum district where the district health department reported managing 452 and 395 cases of nodding and epilepsy in Labongo Akwang and Labongo Amida Sub Counties respectively with no new cases since 2013.