Help Families with Nodding Syndrome in N Uganda

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, through educating and empowering the women and girls on HIV/AIDs Long Term Survival Skills and sponsorship and mentorship of girls in schools, economic empowerment and livelihood food security enhancement for a sustainable development for self-reliance through seeds provision, training in kitchen gardening and support to malnourished children through provision of trainings in provision of nutritious meals, 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.

Activity. Follow Up of families of Children suffering from Nodding Syndrome.

During the month, visits were made to families of children suffering from Nodding Syndrome. This was to provide counselling and emotional support to the families. During the visit, another of issues were raised by the parents as discussed in the body of the report.

The state of the children is still wanting due to the absence of mobile clinic which used to deliver of drugs to the parishes closer to the children, many are getting frequent attacks, wasting and very weak conditions which are made worst with the lack of adequate food in the household. As compared to those children at the center in odek who are well fed by the center management, the children at home are not improving due to poor nutrition and inadequate food where they usually have one meal a day.

With the cause of the syndrome not known to the community, there is stigma from families that do not have children suffering from the syndrome. This is evidenced by parents refusing their children from playing with children suffering from the syndrome and not touching them whenever they get attacks when they are together. This is one practice that is making it difficult for children who could engage themselves in games with healthy children to stimulate their brain development.

Due to enrolment in medication that was being provided by the government, there has been some slight improvement for the children who were constantly monitored by the health workers although there is always a relapse in cases where they miss out on drugs due to stock out from the health centers where they get treatment which forced the children to sometimes go without drugs for a month or for as long as there was still no drug. For example one Abapi died last month from Tumangu Village in Akwang Sub-county due to constant attacks (seizures). Many children’s conditions are worsening due to lack of drugs. The children have stayed for three months now without receiving drugs as there is no longer mobile Van distributing drugs as before at the distribution points. The last time they received drugs was in July and since then no medical worker has gone to see the children let alone tell the parents why there are no drugs. However, there are drugs at the Health Center e.g. in Akwang Sub-county where parents have to move with their children to the health Center which is 7 Miles from the Village. Due to this distance, some parents have stopped getting drugs for their children leaving them to go without drugs thus worsening their conditions. Despite their failure to get drugs from the health Centre and even provide for their children, some of the parents blame this on the government as one of the mothers had this to say.

‘’In the past, the government had promised to support parents whose children die due to the syndrome by providing for the burial arrangements but nowadays that is not happening. Even when your child is very ill, you have to transport the child to the health center on your own account despite the government giving an Ambulance for transporting these children to the Health Centers. Last week, one of the girls suffering from the syndrome was very ill and could not talk, her father had to hire a transport means to pick her from home to bring her to the treatment centre at Government hospital. This condition leaves us parents with no other alternative but rather pray that they get better even without drugs. We have lost hope and all we have to do is struggle since the child is yours not any body’s’’ laments a mother of a Nodding Syndrome victim from Tumangu.

If only we had enough food, we would at least try to feed them despite their condition but this is even difficult now with lack of food coupled with the bad weather this year that has not enabled us to have any good harvest to feed our families. These children are now moving around the village and with the rain, we are more worried of them falling in water and dying when we are out in the fields. Sometimes we are forced to lock them inside the huts but you cannot do this all the time. We pray the government supports these children with food like they used to do before as it would relieve us from so much work of providing for the families.’’ She laments.

Due to this thinking, some parents have abandoned their children. A case of one Akello note her real name from Tumangu Who got but when she fell in fire as she got an attack was deserted by her relatives only to be supported by a VHT member who took her to the treatment Center and nursed her till she was discharged recently. This is a sign that parents are tired of fending or supporting these children.

To enable proper care and support, the parents request for counselling services to be provided to the community especially those who live together with families of children suffering from the syndrome to enable them understand the mode of transmission and why they need to support such children.

There is further need for provision of food to the families of children suffering from the syndrome to improve on their nutrition which is very key to enhancing their growth and improvement.

Where possible there is need to set up a center like that in Odek in Gulu to help care for these children in providing education, medication, counselling, and food so as to give more time to their parents to work in the fields in order to provide enough food for their households. Hope for Humans had consulted with the community in Tumangu to identify four(4) parents (two males and two females) who would help in taking care of these children once the center is established but up until now, this has not yet been dome and even the constructed Health Center is not operational. There are structures but no drugs and health workers yet.

Challenges.
With no funding yet for this activity, it has not been possible for us to conduct any other activity rather than the one reported on.

We are so thankful to global Giving and the River Fund for their untiring support. We could not have done this without all of your help!"

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.