Call to Action:
Hope Center Uganda is fundraising to prevent closure of northern Uganda’s care center for victims of Nodding Syndrome (NS). Without adequate funding to support the center’s operational costs like staff caretakers, feeding, education and therapy, the center will close its doors once again at the end of 2018, forcing the young people to return home to their families, where they risk injury and death.
As thousands of young people are afflicted with NS, we know that care continues to be desperately needed and effective for years to come. The comprehensive Care Center in Odek, Uganda provides a safe place for children to receive therapy and treatment, enabling parents to work and support their families. The Center’s community education and sensitization projects teach families about correct care and supervision of NS, to reduce risks for victim’s.
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*Note: November 27, 2018 is #GivingTuesday: all donations made on this date will be matched by GlobalGiving’s corporate sponsors! For maximum impact, we would appreciate if any donations could be made on this date*
What is Nodding Syndrome?
Nodding Syndrome (NS) is a neurological condition which affects the brains and nervous systems of an estimated 10,000 children in Eastern Africa. Although independent researchers and the respective ministries of health of affected countries Uganda, Sudan, and United Republic of Tanzania have conducted over ten investigations on NS, etiology, mode of transmission, pathogenesis and clinical course remain unknown.
Primarily between the ages of 5-15, affected children display a sleepy appearance and appear to “nod off” and lose contact with the world around them–they are not sleeping, but in fact experiencing seizures. During times of seizures, they cannot control body and are prone to accidents: falling into fires or drowning in bodies of water, causing disfigurement or even death.Each seizure (and there can be many each day) diminishes the child’s mental capacity slightly, and over the course of time, stunt physical growth: a 13-year-old child will often appear to be only six or seven. Eventually, children lose control of their bodies and can no longer perform basic acts of hygiene, feeding, or dressing.
This requirement for full-time care and supervision means parents are forced to cease work, unable to tend to crops and feed their families. Because there are no safe places of care, parents frequently tie their children to trees or posts for their own safety to keep them from wandering into dangerous places. Eventually Nodding Disease kills many of its victims. Death appears often to be a result of such accidents: drowning, falling into a cook fire, or starvation, as seizures in the late stages of the disease make it virtually impossible for the child to eat.
Evidence provided at the World Health Organization Uganda Nodding Syndrome meeting indicates an increasing trend in the number of new cases being detected, as well as a widening geographical coverage in South Sudan and Northern Uganda.
How We Can Help
A healthy diet rich in B vitamins has brought weight gain and reduction in seizures, and special schooling has enabled these children to learn. Our community sensitization and education projects have reduced local fears and stigmas, and allowed these children and their families to be re-accepted by their communities and villages.
Through the special needs education curriculum the children’s knowledge in English in Math has greatly improved. They can now read and write, speak simple English words, can spell and write their names and do simple arithmetic. 13 children have been recommended to go back to the mainstream primary schools while 8 have been recommended for vocational skills training in 2015.
Our Wer Waa Arts program has been providing music therapy sessions to the center, providing joy and boosting confidence in the children’s lives.
- Reduction in seizures. 50% of our children go 6 months without a seizure, 30 % up to 3 months, 10% spend weeks/some months without a seizure attack, and the last 10% have not experienced a seizure in one year
- Reduction in referral cases to an average of 1 per year
- No deaths registered in the last 1 ½ years of children under our care
- Reduction in infections and other diseases
- Reduction in cases of burns with only one case being reported in 2014. This reduction was due to increased awareness and the education of the parents on their roles and responsibilities.
- The nutrition program has improved the health of the children by increasing their body weight.
- The children are much friendlier and interact with others much better. There has been an increase in the social inclusion of children and their parents in community driven initiatives.
- There is a change in attitude towards children with Nodding Syndrome. They are being accepted into their families and the communities. Discrimination against children with NS has decreased noticeably.
- Increase in family self-sufficiency through agricultural support, vocational skills training, and poultry and piggery projects.
- Income generating projects for families has led to an increase in financial security for the future.
Medical Care Access
- In Odek, over 200 children with Nodding Syndrome have access to medical care and health services as a result of our programs.
- 99% of the affected communities now have access to clean water from the borehole drilled at the Hope for Humans care center.
- Self-awareness and independency of the children improved. Upon recovery they can now bathe, wash, help work in the garden, and help with chores around their home.