Hope fades for nodding syndrome victims as NGO closes care centres

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GULU- Hopes of recovery for children suffering from nodding syndrome hang in balance after Hope for Human, the only organisation that has been supporting children suffering from the disease plans to shut down its care centres in Acholi sub-region next month.
The organisation has been providing medical and personal care, special schooling, and nutritious meals to nodding syndrome children since 2012 and has treated more than 300 children at the Hope for Humans Care Centre facility in Odek Sub-county, Omoro District.

Last week, Ms Suzanne Gazda, the founder and chief executive officer of Hope for Humans, said the board of directors made a difficult decision to dissolve the organisation next month.
“Our board of directors has made a difficult decision to dissolve Hope for Humans in August. As you can imagine, this decision was rooted in much consideration, preparation, and prayer,” a July 10 statement issued by Ms Gazda, reads in part.
She, however, said children receiving therapy and medicine from their staff will continue to do so through dedicated “citizens” in the community.

“Any remaining financial contributions in our possession will be used for the intended purpose. A robust reporting structure will remain intact for the remainder of the year to ensure that funds have been distributed,” Ms Gazda added.
Whereas Ms Gazda insists that the reasons for dissolving Hope for Humans is due to the progress the children have registered during their operations, some officials said the organisation has been experiencing financial challenges over the years.
Mr Caesar Okot, the programme manager at Hope for Humans, said the organisation can no longer fund most of its activities because of limited finances.

“There are still many children within the community who are bedridden and are relapsing because their parents cannot afford to take care of them. We had much wanted to bring them to the care centre but unfortunately we don’t have money,” Mr Okot said.
“Closing down the treatment centres will definitely slow down the recovery of the children suffering from nodding syndrome since at their homes, they will not receive full attention from their parents, eat well and get medication on time because it’s a farming season,” he added.
He said although the centres will be closed, their outreach programmes to the affected children within the communities will continue.
Currently, 30 children undergoing rehabilitation are still at Hope for Humans Care Centre.

The organisation this year, also commissioned Tumango Nodding Syndrome Centre in Labongo-Amida Sub-county in Kitgum District but it has been inactive.
According to Mr Okot, about 349 children are still in dire condition in Labongo Amida Sub-county while 40 others are in Bolo Parish, Awere Sub-county Pader District.

Residents appeal
Mr Michael Rackara, a resident of Odek Sub-county whose four children are recovering from nodding syndrome, said government should intervene and support the organisation.
“If this centre closes, where will my children receive medical support from? I am a poor farmer who cannot afford to take care of the children because they are very weak, if the centre closes, my children will also die,” Mr Rackara told Daily Monitor in an interview recently.

An estimated 3,000 children mainly in Kitgum, Gulu, Pader and Lamwo districts in Acholi sub-region were affected by nodding syndrome since 2009 when its outbreak was first reported.

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