My first meeting with children living with Nodding Syndrome

cheerful hearts

Arriving in Northern Uganda, contrary to  life in Kampala , the atmosphere was quite serene .Seeing bushes on both sides of the road with few huts  well-spaced apart,  it immediately dawned on me that I’m in a village where I will live for about  7 weeks. Nevertheless , no regrets. I asked for it! All I had on my mind was meeting the children I had been longing to see…

Firstly, I had to visit the local leaders to seek their approval for my research and I was so overwhelmed by the reception I got from them. Finally, the next day I met these children who were also very excited to see me! They welcomed me with an interesting and energetic dance. It was unbelievable! I couldn’t beat them at it !! These children were amazing, with beautiful hearts full of life and energy. At first, I wondered if they were affected by the mysterious illness, Nodding syndrome, until the  communication officer for Hope for Humans Comprehensive Care Center at Odek , Mrs Apio Christine, showed me the pictures of these children before and after management. There’s a huge difference!!! I wondered why some parents discriminate against their children, and sometimes leave them to die all because they have nodding syndrome.   Although the syndrome has no known cure, but seeing the children managed at this center made me know that having nodding syndrome is not a death sentence after all, if well managed with regular anti-seizure medications and nutritious foods.

There are over 300 children in this community that are afflicted with this illness and only about 70 of these children are being cared for at this center .I wonder where the other children are?  Do they access healthcare? Is there a barrier to assessing healthcare?

The voices of these children need to be heard. They can sing, dance, be happy, and live a good life.

Nodding syndrome is an illness which affects children between ages 5-15 years manifesting with repetitive nodding, drooling of saliva, seizures and cognitive impairment. Affected children lose their minds, wandering around which in some cases has led to accidents such a falling into fires, drowning and even death. Parents often tie their children to trees, so that they don’t wander off. About 7,000 children have been affected with Nodding syndrome in Uganda, Tanzania and Sudan as estimated by World Health Organization. There is no known etiology of the disease and no known cure. However some risk factors such as river blindness, malnutrition, weather changes, pesticides, infections, exposure to munitions and some foods have been associated with the syndrome, but not proven.

Children who live in the poorest conditions with lack of clean water and nutritious foods are more likely to be susceptible to nodding syndrome.



for the video shot, at my first visit to the children at Hope for Humans Comprehensive Care center. Also see pictures of these children before and after management at this center.  There is hope for children with nodding syndrome!!!

Follow me here   as my adventure continues…..



Aciro Grace b

Aciro Grace during selection by Hope for Humans in April 2014

Aciro Grace a

Aciro Grace  now

Adong Janet a

Adong Janet  before

Apiyo Irene b

Apiyo Vicky during selection by Hope for Humans in 2012










Apiyo Irene a

Apiyo Vicky now

Odong Justine b

Odong Justine during  selection by Hope for Humans in 2012

Odong Justine a

Odong Justine now








Opio Dete b

Opio Dete  during selection by Hope for Humans in 2012

Opiyo Dete a

Opiyo Dete  now







Meeting with one of the local leaders

Meeting with one of the local leaders

The children dancing

The children dancing

Dancing with the children

Dancing with the children

Exciting dancing moment

Exciting dancing moment

Collines and I

The Head of Operations  of HFH  Collines and I

Cheerful hearts

Cheerful hearts



  1. Hi Funmi,
    Great intro and thank you for sharing these glimse of joy and hope with us.
    It is remarkable what you are doing and the sacrifices you are making to give a voice to these children. We are all join togehter to help as much as we can.
    Looking forward more updates.
    Take care,

    Florence Ackey, MSW
    Refugee Health Case manager
    Florida Department of Health

  2. Great seeing this and happy that the project is on and running as planned. Hopefully, you gather enough data that will be beneficial and contribute immensely towards finding the cause and cure and/or prevention of Nodding disease. Great work Funmi.


    Funmi, this very intetsting. I am so so proud of u. keep on with d good works my darline sis. The Lord’ll continue to protect, guide & back u up. Heaven is ur limit!

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