Mothers of Children Affected by Nodding Syndrome

J Brenda Lanyero
Posted May 17, 2018 from Uganda
J Brenda giving a helping hand in making brooms for sale to generate income.
J Brenda with some of the mothers of affected children making brooms for sale to generate income.
J Brenda with some of the mothers of affected children making brooms for sale to generate income. : J Brenda being the good daughter. (1/2)

In the scorching mid-morning sun, we were ushered to Okidi by the beautiful Acholi welcoming song chwin wa tin yom (we are happy today) with the wind whistling through the mango tree and women wiggling to the sound of the drums. We joined in by clapping and for a moment, you would not tell that some of the women were the mothers of the children stricken by the Nodding Syndrome Disease as they looked too young. As they treated us to a warm reception,  behind the huge tree away from the dancing arena the malnourished children lay on the laps of the mothers who had not joined in the dance. Amongst them was also a set of twins whose parents I later learnt died in the Kony war, rested on the laps of their grandmother. I was given papyrus mat to sit on while my hosts sat on the yellowing grass.

Okidi is a village in Kitgum Municipality. And on this particular occasion, I had visited as internship student to sensitize the community on the Nodding Syndrome Disease. 

During the engagement, it was clear that in the community, the causes of the disease are still shrouded in superstitious mystery. 

"We the people of Acholi believe that this disease is caused by the sound of the gun or its powder" said one of the women. 

Another woman protested, saying, "no! The disease is either caused by witchcraft or the evil spirits of those who died in the war. Their blood wails and their souls wander finding rest in our children who are innocent victims of the cruelty of this world."

The causes of the disease are still unknown and no wonder the doctor who took us through pre-community entrance orientation warned I and other students on internship of the many existing theories that are out there on the causes of this disease. 

After the meeting, I met individual families to track for the early signs and symptoms detected amongst the children before they were diagnosed with the disease. 

In all the families I visited, I observed that the children were tied to trees when not under the watch of their parents or caretakers for fear that once they got attacks, they would drown in the nearby rivers and I also noticed that all the affected children had to be fed least they doze off and fall in the food they were served.

I observed that the affected children liked eating soupy sauce (meat and fish) and rice. Therefore, I suggested to the families to grow vegetables and harvest meat or fish. This meant that they were to grow vegetables that can withstand the climatic conditions of Acholi and trade the vegetables to buy meat or fish. I also suggested that for any surplus money they get from growing the vegetables, they should buy soap to wash the children's clothes so that they are in good hygiene.

By the time I went back after about three months, some were harvesting the vegetables. It has been this way for the last five years and our dream is to make this go beyond the grow vegetables and harvest meat or fish to a group of self- reliant mothers by getting involved in other income generating projects like poultry, livestock and others.

This story was submitted in response to Share On Any Topic.

Comments 16

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Jill Langhus
May 17, 2018
May 17, 2018

Hi J Brenda. Welcome to World Pulse:-) Thanks for sharing your story and photo. Did your advice of growing vegetables, making an income and buying soap help the affected children and their families? That's awesome that you help women to generate income for themselves. Do you have an NGO?

J Brenda Lanyero
May 17, 2018
May 17, 2018

Hi Jlanghus, thank you so much for the warm welcome.
The idear of growing vegetables did help and is still helping. It may not be good enough but there is a change, a difference, hygiene is good in those families and the vegetables are sold to get what the children really enjoy to eat.

I do not have an NGO. God willing the right partners will come to lend a hand and do more for these families especially the affected children to get home schooling and medical attention to manage the condition.

May be me and you can start up an NGO ☺

Jill Langhus
May 18, 2018
May 18, 2018

You're very welcome:) It's great to have you here!

That's awesome that the veggies and hygiene have significantly improved life there.

I would like to start an NGO someday, but I'm not sure what I need to be focusing on yet. Thanks so much for the kind and thoughtful offer, though. Have you looked at the Community page and filtered members by topic of interest? There are so many amazing women on here to reach out to, to help you with your mission. You may want to reach out to Anita. She's helpful and awesome: https://www.worldpulse.com/en/community/users/anita-muhanguzi.

J Brenda Lanyero
May 18, 2018
May 18, 2018

Thank you so much. I will surely connect with Anita. I pray you will reach a conclusion of the NGO that will bring you happiness and satisfaction and that it will bring a lasting impact on the community you will be in.

Jill Langhus
May 18, 2018
May 18, 2018

You're welcome:) Great! Thank you so much for the well wishes:) I appreciate it!

J Brenda Lanyero
May 19, 2018
May 19, 2018

You are welcome. :)

Olutosin
May 17, 2018
May 17, 2018

Thanks so much for shedding of light on the nodding syndrome. It's my first time of reading and hearing about it. Oh how I feel so very sad for the affected children and their families and caregivers.
My heart break to read about the twins who also lost their mother during the war. Oh my God. Just reading about how they will be tied to a tree to avoid drowning brother me to tears. So sad.

I appreciate your efforts at helping these specific people. May you remain blessed forever. Thanks again and again.

How I wish that the government could do more for them, I want to read more about the topic.

Another suggestion is animal rearing, especially hens, turkey and goats. They start small.

You are an Angel dear sister.

J Brenda Lanyero
May 17, 2018
May 17, 2018

Thank you so much dear Olutosin for your kind words and suggestions. I really appreciate your encouragement.
We would love to start on the chicken or animals but the worms spoilt all the maize where we were expecting to get the income from and so we are waiting for now since I myself don't have a stable job to help.

The government does help especially with medication and some food reliefs but not sufficient as the children really eat frequently. But this project help to supplement their diet.

Olutosin
May 18, 2018
May 18, 2018

You are welcome. Im so happy that the government is supporting. Thats very impressive. I pray that you are able to build a sustainable project with the community.

J Brenda Lanyero
May 18, 2018
May 18, 2018

Thank you so much. I pray for the same too.

Juliet Acom
May 18, 2018
May 18, 2018

Hi Brenda,

Your story is so humbling......I salute you for the work that you are doing.
It is my prayer that we shall soon meet and we can work together on helping communities affected by the nodding disease set up micro gardens to improve their nutrition and economic status.
You are a true heroine, keep soldiering on.

J Brenda Lanyero
May 18, 2018
May 18, 2018

Thank you so much Julie. We shall surely meet and see what more to do. The idea of micro gardens is a good idea.

Karen Quiñones-Axalan
Jun 01, 2018
Jun 01, 2018

Hello, J Brenda,

Welcome to World Pulse!

I like reading stories on community visits. Your internship sounds challenging yet fulfilling as you get to observe cultural practices and listen to the stories.

This is my first time to hear about Nodding Syndrome. I am curious why children are being tied to the trees. Are their behavior uncontrollable? Or is it like an epilepsy? What are the common symptoms? I really have much interest with children with special needs, not that I have an NGO or a network who helps them.

It is heartbreaking that this syndrome has more questions than answers. I want to affirm that these children do no deserve such kind of condition. I hope their families can access the support they need for their children to thrive and live independently.

Looking forward to your updates!

J Brenda Lanyero
Jun 01, 2018
Jun 01, 2018

Hi Karen, yes the internship was that challenging.

The children are tied to trees not because of their behaviour or something like that. When the children get attacks and their caretakers are not within, the children can easily run towards water or fire as we are told. We do not know why it takes them to the water or fire. And this can make them get burnt so badly as they can not feel the pain when attacked and fall in fire, I mean an open flame like a fireplace where they cook from.

The signs and symptoms is like epilepsy and they normally get sizers and until they stabilise, they will drown or get burnt when not being watched or taken care of and this makes them to be tied to trees to enable their mothers or caretakers go to the fields or to collect water and firewood to be able to provide for the family.

Karen Quiñones-Axalan
Jun 02, 2018
Jun 02, 2018

Thank you for supplying me with more info, dear sister. My heart is so heavy. I searched online, Wikipedia says Nodding Syndrome is caused by parasitic worms. And sadly, there is no known cure yet. Such a mysterious disease.

I understand that caretakers need to do housework, and cannot leave their children alone. My heart is broken into pieces.

Stay strong. And if ever you return to that community, please hug the mothers for me. It must be very difficult for them.

J Brenda Lanyero
Jun 01, 2018
Jun 01, 2018

Hi Karen, thank you so much. I will surely do hug them. I normally go back and check them almost every month when I go to the village.

It is not easy for them but they are trying. These women are really strong and brave.