By Pat Robert Larubi
The current debate to reopen the nodding syndrome centre in Odek years after some of our beloved children have nodded to their graves is a big joke. This follows the news that, local authorities in the northern district of Omoro have resumed talks with the government to reopen the nodding disease treatment facility that has been down for more than a year due to lack of funds.
Catherine Lamwaka, the Omoro District Woman Member of Parliament, says parents of the affected children are grounded to afford taking care of them and is asking the government to takeover the facility. Source – #CapitalNewsDesk
I wanted to put it clear that while at BBS in one of my mission trips to Odek Sub County in Omoro District, I investigated one of Northern Uganda’s forgotten crises, the Nodding Syndrome. A mysterious disease that silently ate up children in Acholi land.
In my reports, I stated that a number of children had been left alone or abandoned to die with no one to listen to them. These where the breed of the next Acholi generational leaders. Yes, the war had taken its course and this time round nodding syndrome was feasting on our very own children and yet all leaders had opted to keep quite.
On 15th March 2017, I went further to launch “Dress Me Up Campaign” – a digital online program to lobby for the support of these children who had been abandoned to fate with an aim of dignifying their lives even if that had been left to die.
All these campaigns were intended at one; address the issue of poverty which was at its peak. Hundreds of families had been locked up in severe poverty besides the neglected cases of dotted death. Even if they had been abandoned and left to at least they needed to die decent death. Without relenting, I worked through the thin margin as an individual to bring the voices of the forgotten Acholi race into the spotlight. This he did through his special documentary films campaigns.
With barely month to the ballot, the debate on the plight of children is back on the drawing board and the question of why now remains largely unattended too and this seems like a scheme to defraud the already vulnerable populace with their right to life since they have no voice and place to hold back for support.
With grief and fear in 2017 I wrote an emotional letter “TEARS IN ODEK” addressed to the President of Uganda as noticed below.
Dear Your Excellency, Yoweri Kaguta Museveni the President of Uganda, I bring your attention to the children of Odek who need your support like never before. From the two decades war came the deadly Ebola viral disease and here again we are being riddled by another dreadful disease, The Nodding Syndrome. Our walk to freedom has been a painful one, the only thing our young stars have received for the burden of their condition is outright silence as they continue to suffer through no fault of their own. If you ever decide to take time off to encounter and experience the life situation of these children and their families. There is no doubt that you will be propelled to act as the father of this nation.
But I have to say this, if you truly care for them then you will not leave them to languish in pain. we cannot develop our country Uganda in total isolation while young innocent souls are nodding to their early grave in our land and yet nothing seems to be shifting forth. Yes, you fought a tough war to save us from the hands of the Lord Resistance Army – LRA remnants but what about our children? It’s equally sad how our leaders at both local and national levels have gone silent over the same.
Lost in honeymoons, merry marking and glue to their fortune and here we are left hanging in tatters. If there was anything for them to deal with spot on, it would be the issues of the nodding syndrome. But I think they are not even bothered by what is choking their electorates. I am mad at their silence, an outright silence to an extent that I think this is nothing to do on their agenda.
However, change of mindset is very critical in national upbringing of this country. Inclusive development requires the government, local leaders and their subject to work together for a common cause. But in Acholi land, we are lost and drawn in the illusion of leaders who are too far from reach.
Acholi Parliamentary Group itself is just like a can of worms, full of intellectual’s yet divided over petty petty issues. We will not blame them but rather our electors who voted them in surely knowing some were self-seekers. Driven by selfish interest and yet with falsified claims that they are working for Acholi. We have seen your exceptional and highly praised parental leadership but if this is anything to do with the wellbeing of all Ugandans. Then know that in Omoro, Pader and Kitgum we have young children pass dead. They are embodied in weak bodies carrying a diminishing soul.
With all these said, I implore you to listen and act on this voice call. It’s the plea of the most vulnerable soul in our mother land Uganda and particularly in Acholi. Sincerely, I remain to be your obedient but disgruntled son Pat Robert Larubi, Wod Kati Kati Lacor.
In my opinion, the continued advocacy propelled the president Museveni to make an impromptu visit to Tumanguuu child care centre in Kitgum. However, the whole event was in a rush as he struggled to find his way to catch up with the thanksgiving prayer of Hon Beatrice Anywar.
That never held me back as I continued with my online activism when I penned another moving poem on the life of Alaroker Monica saying;
In her sick bed, Monica has been here for close to ten years battling Nodding Syndrome. Her future is uncertain, with no hope just because the world has shut up on her. She looked into my eyes like she wanted to say a word but nothing, NOT even a whisper. The disease had already taken full control of her life. This he said referring to Monica whose body was laid before him in an old rugged mosquito net for a bed. It is pathetic. I mean it is hard to see and comprehend how families had been deprived by the disease and yet they had no hope. Majority of the families preferred these children dead than see them suffer endlessly with no support and worst still of a disease with no known cause or cure.
The writer is a former journalist and human rights activist who hit the limelight with his hard hitting stories on the plight of children with nodding syndrome.