Two nodding syndrome patients die after care center closes in omoro district

Two nodding syndrome patients die after care center closes in omoro district

By Denis Otim

Two children, who were suffering from nodding syndrome, have died only a month after Odek treatment center in Omoro district was closed because of lack of funds.

At least 29 children suffering from the syndrome were in December 2017 sent home, when Hope for Humans, a Non-governmental Organization that was providing medical and personal care, special schooling and nutritious meals to the children for five years, stopped.

Caesar Okot, the Program Manager at Hope for Humans told members of Omoro District Nodding Syndrome Taskforce that the children died between December and January this year.

According to Okot, one of the children, identified as Denis Olara, 17, was found dead at their home in Bolo Parish Awere Sub county Pader district four days after the center was closed. While Agnes Ajok, 15, another victim from the same village, died last week.

Okot explained that the children died following a relapse triggered by lack of medication and good nutrition, and negligence by caretakers.

“The death of these children indicates the level of their vulnerability while at home,” Okot said.

Okot added that a number of patients have not accessed their medication for a month, because of long distance from health centers.

“If government doesn’t intervene and re-open the center to provide treatment to the children more will relapse and die,” Okot said.

The Omoro District Chairperson, Douglas Peter Okello said much as the children are in dire need, the district has no capacity to fund operations of the center.

Okello appealed to the government and well-wishers for help.

He blamed government for not honoring the promises it made last year to aid affected households with food supplies from the Office of the Prime Minister, OPM.

 “…nutrition and medication remains a great challenge to those affected because of their impoverished background.”

“We are in crisis, the children are in danger…., we have lost lives because the only care center giving them hope is no more,” Okello said.

In December last year, the State Minister for Northern Uganda, Grace Kwiyocwiny told Omoro district leaders that government would partner with the district and other stakeholders to support the center.

Statistics from the Omoro district health department show that 55 percent of the children have deteriorated within the last two months, while six girls got pregnant between October and December last year.

Twenty two children have died, and more than 270 are still battling the mysterious syndrome, since it was reported in Omoro district 2012.

Nodding syndrome is a neurological condition, which affects mainly children aged 5-15 years. It presents with spontaneous and uncontrollable nodding of the head, epileptic seizure, drooling, degenerated physical and cognitive abilities, stunting, and death.

The origin of the syndrome has baffled scientists and doctors globally for decades, and findings on its cause remain inconclusive, although others speculate that it is transmitted by black flies that also cause river blindness.

Since it was recorded in northern Uganda in 2009, nodding syndrome has debilitated more than 3,300 children and killed an unspecified number in the districts of Lamwo, Kitgum, Pader, Gulu and Omoro.