WE TIE THEM SO THAT WE CAN FEND FOR THE FAMILY: THE PLIGHT OF PADER PARENTS OF CHILDREN WITH NODDING SYNDROME DURING PANDEMIC

Some of the children living with nodding syndrome in Pader district

BY CHRISTOPHER NYEKO

PADER: SATURDAY, OCTOBER 30, 2021

In 2004, Marcella Acet was confined with her family at Lacek Ocot internally displaced peoples camp as a result of increasing atrocities against civilians during the height of the Lord’s Resistance Army (LRA) insurgency. This was when her five children developed symptoms of nodding disease.

When “operation Iron Fist” ousted the rebels out of Northern Uganda and a semblance of peace was restored to the region, Acet returned to her village home at Lapaya in Pucota parish, Angagura Sub-County in Pader district.

The 56-year-old began growing crops like cassava, beans and maize and farming chicken and goats like she did before the war to provide her family’s welfare.

And she frequented Angaggura health centre III for medicines to treat symptoms of epilepsy and others so that the sick children stayed in stable condition.

She narrates that several times when medicines got out of stock from Angagura health center III, medics referred her to buy from the private health facilities.

To do that, Acet sold some of her produce, poultry and goat to get money for buying the medicine for her children.

She says when their condition worsened, she would take them to St Mary’s hospital, Lacor in Gulu city which is 46.7 kilometres away from Pader.

But when the dreaded Covid-19 pandemic hit the country and the government imposed lockdown and a raft of other restrictions as containment measures, life only went from bad to worse for the parents looking after the children with nodding syndrome.

Acet lost two of her children during the lockdown regime because she didn’t have money to take them to Lacor hospital.

This was when she decided to start tying the other three children with ropes at home so that she would squeeze some time to go out to look for money and fend for the family.

Nodding syndrome is a mysterious seizure-inducing epidemic whose exact cause has not been discovered, but which emerged in Northern Uganda during the time of the LRA insurgency.

It has since affected more than 3,000 children and there is no definite cure for the syndrome.

Pader district has 10 sub-counties affected by the nodding syndrome- Acholi bur, Latanya, Pajule, Ajan, Awere, Lapul, Angagura sub-county, Lunyili, Atanga town council, Atanga sub-county.

Angangura sub-county leaders report that the sub-county has over 467 children and young adults living with nodding syndrome and over 40 children died during the last three years including seven deaths recorded this year.

Freddy Stephen Okello, the local council three chairperson of Angagura sub-county, said deaths of children with nodding syndrome increased during the pandemic because the lockdown led to hiking of costs of transport.

He added that when public transport was banned, it hindered parents of these children from taking them to access medication.

Doreen Aber, 64, a resident of Go-Ogwiri village, Kalawinya parish, said that sometimes the children turn wild and destroy home property and crops, and that one time her grass thatched house was sets ablaze by one of her children

Yolam Ogik, a resident of Kalawinya village has four children with nodding syndrome, one of whom has been raped and impregnated three times by unknown men.

This means that in addition to looking after four children with nodding disease, he now has to take the added burden of caring for three grandchildren.

To protect the children from falling in fire, drowning in water, veering on to motorized roads or getting into the way of sex predators, parents of children living with nodding syndrome in Pader district have resorted to tying them with ropes.

It is a measure adopted out of desperation as the parents find themselves short of alternative humane solutions.

The Angagura sub-county speaker, Odwar Balber Dentty Orech, however appealed to the parents to stop tying the children because they are not goats or cattle.

“Let one bread winner go and work in the gardens while the other stays at home with the children,” he advised.

But the district councilor, Dickson Ojok, appealed to the government to fulfill its pledge to help these parents to construct permanent houses, provide medication, and ox-plough services to increase food security for the affected families.

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