Photos: Left to Die – it’s The Face of Nodding Syndrome

1. Alanyo Fiona 17, struggles to walk in search for food, behind is their last born. Alanyo was found to be suffering from Nodding syndrome, a neurological disease that has left her restless and malnourished. Akoyo village, Lamola Parish, Odek Sub county, Omoro district on 28-08-2017.

Gulu : The lives of children battling with nodding syndrome across Acholi sub region hangs in a balance after hope for human a humanitarian organization that has been taking care of them is threaten by a closure.

According to Ms Suzanne Gazda, Founder and chief executive officer Hope for Humans, a resolution was passed by board of directors to have Hope for Humans Care Centre facility in Odek Sub-county, Omoro District where more than 300 children have been treated dissolved. Besides she said,I have self-funded Hope For Humans for the last 5 years we have been asking for help from other NGO’s , the Ugandan government and have received no significant sustainable funds or help. Hope for Human is very proud of the work we have done our best, I deeply regret that we must end our mission because without funding we cannot carry on” in a note from a one-one interview on her decision.

Her pronunciation comes with dwindling hope, fear and worry on the future of the sick and families raising these lids battling little know disease “Nodding Syndrome” whose real cause nor cure has been scientifically proven.

Indeed, Hope for Human was the only organization providing medical and personal care, special schooling, and nutritious meals to nodding syndrome patients whereas the government labored to provide food supplements and other necessary medical supplies to help reduce on the pain and suffering of the victims.

Caesar Okot, the programs manager hope for humans confirmed that there was plan to have the centre closed but an outreach program maintained where the community nurse will be in position to touch base with the affected families on a regulr basis for a period of three month before the project can eventually come to a complete halt.

The over 30 children currently grounded at the centre will have to be ferried back home when the right time comes but we are going to engage with the district to see what we can do locally to try and support these kids further.

“Haha there is nothing special we will do as parents to save these kids, they were picked from us in bad conditions and before then now they want them back home we ill just wait to bury some of them” Mr. Alfred Oyaro echoed.

1. Alaroker Monica 19, lies helpless on her bed as she waits for her mother to come support her as usual. Both her hands and legs have been paralyzed as a result of prolonged illness. She cannot seat, talk, walk nor eat on her own self. She has had to undergo long hours without food or even locked in the house as her parents switch roles between home chores and farm work so as to sustain the family.

1. Alaroker Monica 19, has been grounded on her death bed for 11 years now in the hands of nodding syndrome, a devastating medical mystery with no known cause nor cure that has left over 300 children dead. Pictured from Ayom village, Bolo Parish, Awere Sub County, Pader district on 28-08-2017.

Meal time- Lanyero Esther 50, feeding her only remain child, Alaroker Monica grounded by Nodding Syndrome inside her one roomed grass thatched house deep in Ayom village, Bolo Parish, Awere Sub County, Pader district. Lanyero’s tale of losing a son two years ago to the same fate and now her daughter suffering through no fault of her own for over 13 years now provokes tears.

Lanyero Esther 50, feeding her only remain child, Alaroker Monica suffering from nodding syndrome inside her one roomed grass thatched house deep in Ayom village, Bolo Parish, Awere Sub County, Pader district. Taken on 28-08-2017. Her tales of losing a son two years ago to the same fate provokes tears.

No Food No Medication – Lanyero Esther, planning to administer some medication for her daughter, she is not sure what she is treating because the doctors have never come out to say what it is, 13 years down the road there is no improvement. The once jolly and active baby girl of 8years has been reduce close to a child of seven years back at their ancestral home in Ayom village, Bolo Parish, Awere Sub County, Pader district.

Lanyero Esther, prepares to give her daughter Monica medication, she is not sure what she is treating and when she will stop administering medication for its a lifelong story of taking medication but with NO sign of improvement in Ayom village, Bolo Parish, Awere Sub County, Pader district on 28-08-2017.

Seated alone in the compound on first sight you could mistake her for a young kid but hell No she is 17 years old kid whose growth has been altered by nodding syndrome disease. Without a word she takes a keen look at me as I make an entry into their compound deep in Akoyo village, Lamola Parish, Odek Sub county-Omoro district.

Alanyo Fiona looks on at us as we make our way into their home in Akoyo village, Lamola Parish, Odek Sub county-Omoro district. She can be mistaken for a kid on first sight but she is 17 years old suffering from nodding syndrome. Taken on 28-08-2017.

She is Alanyo Fiona 17years old on arrival at their home she feasting on plain boiled cassava. You could be wondering what could have happened to her fingers? Yes Alanyo fell in fire following an epileptic attack and before her parents could save her she had been deformed. She lost her fingers and sustained serious burns on her body. This is one of the reason why some of these children are chained in the house besides the fear of them wondering off or getting drown in water when the untimely moment of their epileptic seizures attack

Alanyo Fiona 17, feasting on plain boiled cassava, she lost her fingers and sustained serious injuries on her arms when she fell into fire during a seizure attack. Pictured from Akoyo village, Lamola Parish, Odek Sub county, Omoro district on 28-08-2017.

Alanyo Fiona lost her speech six years ago, she cannot talk but thank God she can struggle to walk unlike Monica who has been totally grounded. When hungry, Monica wonders in the compound picking on anything she feels can be eaten on spot I met her with a corn stalk in her hand before she was served a better meal to eat.

Survival for the fittest – More often kids with nodding syndrome struggle for food with some of the domestic bird at home simply because they are weak and helpless. See how the hen pictured herein is trying to have a share on Alanyos meal of the day.

2. Survival for the fittest, more often kids with nodding syndrome are left to fend on their own and as such they are disturbed by domestic animals and birds as seen from the picture of Alanyo Fiona 17 with the bird trying to get a share of what to eat. Akoyo village, Lamola Parish, Odek Sub county-Omoro district on 28-08-2017.

Smiles of Hope- Ballam Opiyo 18, is one of the most interesting young peson you will encounter on your first visit at the care centre in Odek. He is jolly despite his sad past! Balam was once rejected by his own parents just Incase the centre is closed abruptly he will have Nowhere to call home. Neglect, frustration, long illness period coupled by poverty parents of children ailing with nodding syndrome are lost in thoughts and prayers……maybe one day God will surely make it come to pass.N

1. Smiles of hope with Ballam Opiyo 18, very interesting person with a sad past. Rejected by his family, left to die of Nodding syndrome to-date Ballam’s parents are not sure of his return home thus spending three years at the HopeForHumans care centre in Odek sub country, Omoro District 11-08-2017

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