CHILDHOOD IS THE MOST BEAUTIFUL OF ALL LIFE'S SEASONS

By focusing our energy towards our goal to transform and secure the lives of children living with Nodding Syndrome, the choices we make create a reality for these children and because of this, we hope we can attract you to the same cause. Children urgently need critical life saving supplies, we cannot wait for #GivingTuesday. Click DONATE to help.

Goal

Transform and secure the lives of children living with Nodding Syndrome by addressing their health and nutritional needs. Educate their families, caregivers and communities as to how to manage and care for the children; maintain their rights to live a life of dignity and not of abuse and neglect.

Nodding Syndrome

Progressive brain dysfunction, stunted growth and nodding of the head, which happens when the children feel cold or when they are given food. Due to stunted growth, a 16-year-old girl will look like she is 5 years old – literally stuck in time.

Cause

To date, the cause of Nodding Syndrome remains unknown and there is no cure. The condition can be managed by addressing the health and nutritional needs of these children. The volunteers, and families of these children need to be trained on how to handle children with Nodding Syndrome.

Support

Urgently, the children need basic supplies like food, clothing, and shelter. When the children develop an episode of seizures, they can swallow their tongues and suffocate, damage their limbs or fall in open-pit fire or drown in rivers.

TEAM

We all need each other

Tiff Gravel
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Tiff Gravel

Nodding Relief

Robert Okot Abeno
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Robert Okot Abeno

Nodding Relief

Johnson Oweka
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Johnson Oweka

Nodding Relief

Tamsin Scurfield
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Tamsin Scurfield

Advisor

Abraham Anun
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Abraham Anun

IT

PROGRAM

We do not have all the answers. However, because of a force greater than our own, we have been prepared in ways that we did not even know that we were being prepared for and the truth is, for us and every person, every single thing that has ever happened in your life is preparing you for a moment to come.

Emergency Intervention to save lives

The children have critical lifesaving needs, and as of January 5, 2018, we had received reports of 2 children who had died during the Christmas holiday period after they were sent back to their homes. By the time we finalized the draft of this program, we had 5 children who had been directly and indirectly served the now jobless nurses, reported dead in their homes. This is a reality for these children that we urgently need to change as we work towards a longer term program.Urgently, the children need basic supplies like food, clothing, and shelter. These basic needs are a huge burden to their families, and so the children face neglect, abuse, shame and humiliation. There are emergency cases when a child is burnt after falling in an open-pit fire and they cannot get to hospital and even if they got to the hospital, they do not have the finances to take care of the medical bills.Our Out Reach program will ensure that Village Health Team (VHT) nurses (some of whom were previously volunteering with Hope for Humans charity) to deliver and administer drugs and foodstuffs on motorbikes. Under the guidance of Nurse Johnson who has done this for the last 3 years, they would be required to ride deep into the villages because some of the places have no proper roads and during the rainy season, the footpaths become impassable. The nurses will also carry out spontaneous visits to make sure the families are accountable for the health and nutritional needs of their children.

Acholi sub region

Involve the families and community

We all are a product of our upbringing and our beliefs reflect our cultural experiences. We are part of the community and the community is part of us. People make decisions based on shared cultural values. Therefore, strategies alone will not be successful without the context of the culture of the communities within which they have to work.We want to educate their families, caregivers and communities as to how to manage and care for the children; maintain their rights to live a life of dignity and not of abuse and neglect.It easier to rehabilitate the children in their homes with the support of their families. The obvious benefit is that the family and the community are involved in the whole process and it is more self-sustainable. With your help, these children will be able to live meaningful lives in a family that gives them the respect and dignity they deserve to thrive in the community. Not only will this empower the parents and siblings to treat their sick family members in a more humane way, it is a far more cost effective and sustainable solution to caring for these children.

Acholi sub region

Build a special home for the children who can not continue normal lives

The bigger picture is to have a self-sustainable care facility specifically for Nodding syndrome patients were they could acquire quality education. A facility that is specifically designed for their needs as special needs children. There are children who indeed can not stay with their families and so need a home where they can be accommodated and then there are children who need to be rehabilitated, after which they can continue with their lives in the community. The eradication of poverty and the provision of equitable and inclusive quality education for all are two intricately linked Sustainable Development Goals (SDGs). The funding to facilitate this program however, is a challenge.

Acholi sub region

3320

DIAGNOSED

22

RAPED (KITGUM*)

7

DROWNED (OMORO*)

7000

SUSPECTED

The human mind is a powerful force. It can enslave us or empower us. It can plunge us into the depths of misery or take us to the heights of ecstasy. What about the children who are suffering from mental illness? What is going on in their minds? How do they see the world?

Copyright 2018 Nodding Relief. All rights reserved