Help Families with Nodding Syndrome in N Uganda

Supporting families of Children with Nodding Syndrome
www.riverfund.org

Report compiled by Aloyo Innocent Jessie, Project Leader: River Fund HIV/AIDs Family Support Women Association, Kitgum.

Background.

The River Fund HIV/AIDs Family Support Association is a Community Based Organization (CBO) founded in 2007 by committed and motivated women to contribute towards improving the quality of life of persons infected and affected by HIV/AIDS and life threatening diseases, through educating and empowering the women and girls on HIV/AIDs Long Term Survival Skills, sponsorship and mentorship of girls in schools, economic empowerment and livelihood enhancement for self-reliance through seeds provision, training in kitchen gardening and support to malnourished children through provision of trainings in nutrition, and provision of basic items like soap, sugar, cooking oil, salt.
The organisation envisions a just and caring society where people yearn to help one another and realize that every human being is connected to one another for a change in the world with values such as: sharing, Love, Non-Discrimination, Humility, Peace, Non Violence, Justice, Inclusiveness, Service, Dedication, Honesty, Transparency, and Compassion.

Activities carried out this quarter.

1. Psychosocial Support training of Care givers
2. Home Visit
Activity 1. Training of care givers on psychosocial support for children suffering from the syndrome.
A three days training on psychosocial support of caregivers was conducted from 27th - 29th July 2015 at Anyuka Village in Okidi parish, Kitgum district. A total of 20(2 Male: 18 Female) caregivers attended the training.

The training objectives were:

1. To help participants appreciate what happens to their children and recognize that the children need their support to cope with the situation.
2. To enable the caregivers understand the different types of “gifts” that families and communities can give to children to build their inner strength.

Expected outcome of the activity

• 30 care givers trained
• Increased knowledge and skills on how to manage children with the Nodding Syndrome
• Enhanced knowledge on the different support family members can provide for the children in times of crisis (seizures).

Activity 2. Home Visit.

One of the caregivers visited with two of her daughters suffering from Nodding syndrome.
During the month of June, home visit was made to 6 households (3 in tumagu and 3 in okidi) to assess the level of improvement in the health of children suffering from the syndrome and below were the findings.
Years after the Nodding Syndrome hit the limelight, many researches were conducted and to date no specific cause of the disease has been got. However, this has not stopped the government and other NGOs from providing support to the children and their families.
With the challenge in funding and trend in development after the war, few NGOs are now working in northern Uganda with many focusing on development programmes and no specific intervention for children with conditions like the Nodding syndrome.
While Hope for Humans established a center in odek, Gulu district where these children are supported while their parents carry out domestic and productive activities during the day, it is not the case with Kitgum district where the parents have to balance between productive and care giving work for their children suffering from the syndrome.
The government is still carrying on with the provision of the drugs. However, for the past one month, the children have missed out on the drugs that is usually delivered to the different sites e.g. in Tumangu Village, Lamit Parish Akwang Sub-county in kitgum District. The care givers have to trek to Akwang HCIII which is over 7 miles from the village to get treatment for their children.
There is no food security within the households as a result of little time spent in cultivation work and care for the children, the households are faced with acute food shortage and poor feeding pattern in which the households depend on 1 or two meals a day of the same food type. There is further no provision of food supplement (Plump nuts) as before to improve on their diet. This is due to the inadequate funding from the government or partners to aid in this course.
NGOs like LWF that was supporting households of children suffering from the syndrome in the past has also scaled down on their work living the care givers to fend for the food themselves amidst other challenges.
While chatting with one caretaker, she had this to say “We mothers of these children have become prisoners, we cannot do anything for ourselves while taking care of these kids, we cannot even do much cultivation work now being a planting season because when you are in the garden , you are always worried of the child getting an attack, moving away from home or falling into fire” lamented a caretaker when expressing the challenges they are faced with in taking care and providing for these children.
Coupled with the above challenge, there is poor hygiene and sanitation in the community and worst in households with children with Nodding Syndrome. This is common with children who are being supported by grandparents who are usually elderly e.g. Aromorach in Tumagu who has a problem with saliva flowing from her mouth all the time.

Achievements.

• Trained 20 care givers.
• Conducted follow up (home Visit) with 10 households to discuss about challenges that they face in taking care of children suffering from the syndrome.
• Identified challenges faced by caregivers in providing for their households

Challenges.

Transport to and from the project sites is yet another of the challenges being faced. River Fund does not have a reliable means of transport and hence relies majorly on hiring motorcycles to facilitate field activities.

Recommendation.

1. Individual households affected by NS require a deliberate move to strengthen the livelihood component through provision of improved and fast maturing seeds.
2. There is need to engage the children in physical sporting activities as this will enhance their health and brain development.
3. There is need for health and hygiene education to be conducted for the care givers.
4. Support with Clothing and bedding for the children

Conclusion.

Without funding the planned activities were not conducted and this requires support to enable the Association reach to families who are in need to support these children.