00:02-00:05 title

Innovative Multimedia Group Presents

00:08-00:13 title

A Heather Angel Chandler Film

00:40-00:45 title

A Question of Humanity

00:47-00:50 title

Original Score by Criz Sâbre

00:52-00:55 title

Northern Uganda

Radio voice:

00:15-00:34

The mysterious Nodding Syndrome has claimed the lives of even more children in Northern Uganda and South Sudan. (music) The locals describe the children with the disease as alive in dead bodies. In Northern Uganda alone, there are thousands of reported cases of children with Nodding Syndrome.

00:58-1:04 ID title

Angwech Collines, Director of Operations, Hope for Humans

00:55-1:22

Angwech C.:

We are heading out to Odek to check on the kids that are not in our outreach program and that are not in our full-time program either. We feel like our hands are tied because we don't have enough funds to reach out and help everybody. In the same sub-county that we are working in there are still kids that are doing so bad, and this specific family that we are going to has two children with Nodding Syndrome.

1:23-1:26 title

Odek Sub-county

Grace's Mother:

[foreign language 00:01:30-1:37] I have nine children. Two of my children are sick.

Children:

[foreign language 00:01:40]

[00:02:00]

Grace's Mother:

[foreign language 1:53-3:34] Taking care of Grace has become quite difficult for me. I have to first go to the garden, then come back and look for food. She remains alone. She has up to five convulsions a night. During the day she can have up to six convulsions. I gave birth to Grace in 1998. When I gave birth to her she was very healthy.

[foreign language 00:03:19] But she got sick in 2005 at the camp. She started losing weight, then nodding, and now convulsions. (music)

[00:03:53-4:02]

Walter was also very healthy when I gave birth to him. I worry a lot about him and think his condition might be like Grace's.

Angwech C.:

04:04-04:17

It breaks my heart to see Grace in this bad condition and knowing that she could so much better at our center. I wish we could take her right now but we just don't have enough funding to take up more children.

Grace's brother:

[foreign language 00:04:40] I hope Grace get's well.

4:47-4:51 title

Hope for Humans Center, Odek Sub-county, Northern Uganda

Lillian:

4:55-4:58

(bell) Please. Before opening this center, they were neglected.

[00:05:00]

Children:

Would you mind helping me?

Children:

No thank you.

5:07-5:12 ID title

Lillian, Teacher, Hope for Humans

Lillian:

5:03-5:18

Good. The parent have seen that there's no future in these kids, and they are looking at them as those ones who are waiting for their time to die. The beginning, in the day, we can get more than 30 seizures.

Suzanne Gazda:

I've been a neurologist for 24 years and I've never seen anything more horrific than Nodding Syndrome. It is a devastating problem affecting children in Northern Uganda and South Sudan

5:34-5:39 ID title

Suzanne Gazda, MD, President & Co-Founder, Hope for Humans

Angwech C.:

[00:05:44-6:00]

In Northern Uganda there are thousands of children with Nodding Syndrome, and the first sign presents when the children keep nodding their heads like they're falling asleep, but they're really not falling asleep. Their heads just keep dropping, and it drops like they are falling asleep but they are not.

Suzanne Gazda:

Nodding Syndrome has affected thousands of children of a tribe called the Acholi tribe that live in Northern Uganda and in South Sudan. This is a disease that affects only children, usually between the ages of 5 and 15. The children are born normal but what happens is, once this disease begins to affect them, they lose their cognitive skills, have to drop out of school, although previously had been doing well. Then they develop seizures which are very, very severe and very difficult to control. Sometimes these children will have 20, or 30, or 40 seizures in a day.

[00:07:00]

The third thing that happens is many of them become physically stunted so that a child that's 12 or 13 will look like they're 4 or 5 years old. It's a great mystery as to why all of these three things come together and affect these children.

Interviewer loc:

[foreign language 00:07:06] How do you feel when you get an attack?

Ballam:

[foreign language 00:07:12] I feel my chest hurting.

07:07-07:13 title ID

Ballam, 14-years old

Interviewer loc:

And then?

Ballam:

My chest hurts around here and around my back hurt too.

Suzanne Gazda:

We don't know if Nodding Syndrome may or may not have global implications. Just because we have determined it's not infectious, that does not mean that it won't show up on American soil one day. The answers must be found to this medical mystery. We have not found a way to cure the disease. The children are suffering greatly.

[00:08:04]

Angwech C.:

Justin is 16 years old and Ballam is 14 years old. They're two brothers that basically live in a small hut by themselves. Justin and Ballam lost their mom when they were really young, and their father remarried another woman who kicked them out of the house.

[00:08:37]

Ballam is 14 but he really doesn't look like he's 14 years old. He looks like he looks a lot younger, like he's 7 years old. Ballam is one of the most dedicated people that I have ever met. He is very determined to see his life better and different. He is very weak but the things that he does, like waking up very early from his house at 6:00, making sure that he walks to school early enough, and he walks actually about 9 miles walking to the center and coming back to their home.

09:18-09:21

Title ID

Godwin, Hope for Humans Staff

Godwin: [09:15]

Sometimes it rains so heavily, but they're still determined to walk to the center all through the thickets and the bad roads, they still make it to the center every day. The center's totally changed him. He's not the miserable little boy that use to just sit home with no hope.

09:37

What hurts me most about him is that he's so alive inside. He speaks with confidence.

Ballam:

[foreign language 00:09:44] Hey, let's walk to school.

Godwin:

Now he sees the light. Now he sees that he can actually live and be someone.

Ballam:

[foreign language 00:09:55] Be on your way to school. Walk on top of the grass.

[00:10:00]

Justin:

[foreign language 00:10:00] You walk on.

Ballam:

Uh-uh, uh-uh. You get to school.

Godwin:

10:07

Ballam is one kid I know who takes the center as his home. I think he sleeps with this in his head and he's like what time am I going to wake up so I can go to the center?

Sarah:

10:19

[foreign language 00:10:23] Go brush your teeth. Get that off your head.

Ballam:

[foreign language 00:10:25] You need to brush your teeth.

Sarah:

Speed, speed. Alfred [foreign language 00:10:32] brush your teeth over there.

Ballam:

Hey! Brush your teeth.

Sarah:

[foreign language 00:10:59] Ballam. You are taking too long and haven't washed your feet yet.

10:48-10:51 Title ID

Sarah, Hope for Humans Staff

10:46

Before he was here, Ballam was really, very, very weak. Ballam is now able to brush by himself but before he could not.

[00:11:00]

Ballam:

[foreign language 00:11:01] I like it here at the center.

Interviewer loc:

[foreign language 00:11:04] Do you like it a lot.

Ballam:

Yes.

Angwech C.:

11:08-11:33

The love that exists between him and his brother is just so incredible. Justin will not leave the center if Ballam hasn't left or he will not leave home if Ballam is still sleeping, so they always do things together. Justin is always fetching water so that Ballam has water bathe and he washes his clothes, and he doesn't complain at all. They just really love each other, and Ballam as well. He always looks out for Justin.

Ballam:

[foreign language 00:11:40] before I started going to school I really wanted to attend school.

Sarah:

Well done. You people, you clap for Ballam.

[00:12:00]

Godwin:

Ballam and Justin are really going through a tough time given the fact that they're already sick and then adding onto that, given the fact that they are living with a stepmother, who I am sure is not very, very supportive of them most of the times.

title ID 12:13-12:19

Justin & Ballam’s Stepmother

J,B Stepmom:

[foreign language 00:12:21] The problem was that when the children became infected, one was supposed to keep a constant watch over them without going anywhere.

Godwin:

[foreign language 00:12:26] Is there anyone who looks after you?

Ballam:

[foreign language 00:12:28] Nobody.

Godwin:

Doesn't your dad help?

Justin:

[foreign language 00:12:38] If you tell dad anything concerning money, like soap-

Ballam:

If we tell him anything concerning money for things like soap, he avoids it saying he will buy things yet he does not buy them.

[00:12:50]

Justin:

He keeps saying he will buy things for us, yet we keep waiting and still he buys nothing.

Ballam:

Even haircuts.

Justin:

He says we are bothering him, that our hair doesn't need trimming. Other students have their hair trimmed.

Interviewer loc:

[foreign language 00:13:07] Does it hurt you that other children won't play with your kids?

13:07-13:16 title ID

Justin & Ballam’s Father

Justin & Ballam’s father:

[foreign language 00:13:11] It hurts when other parents are running away from your children. Sometimes they get seizures when I'm not there. If your neighbor won't help, you feel bad.

Angwech C.:

13:27-13:45

The community think this is some kind of demons that have attacked these children, so they do not want to get associated with those children. You see that it's, they're in a situation where they're neglected, some of them even by their own families. Their parents don't know how to deal with them. They don't know what to do.

[00:13:46]

A lot of people don't know that it's not contagious and the reason Ballam's stepmom kicked them out of the house is because she doesn't know that it's not contagious, and she fears that her other children will get Nodding Syndrome too.

In the villages in this part of the country people rely on farming. If you don't farm, you do not have food. You do not have anything for you family. People barely have a dollar a day, or even a week, so for them to be able to provide for their family they have to go and farm the whole day. For the case of parents with children with Nodding Syndrome, if they cannot leave their homes that means they cannot go to their farms to get the food that they need for their family.

So, for these kids with Nodding Syndrome, they become mentally impaired and if not watched, they fall into fire and there are- get a seizure while they're around the fire and fall and get burnt. Until somebody picks them up they actually don't know that they are burning because they are in a seizure, until they wake up and they start feeling the pain.

[00:15:00]

We're talking about people. We're talking about children. They are being tied onto trees like cows, like animals. You find that a parent really cannot do much with their lives. They want to be able to provide for the rest of the family because they have other children as well, but for them to do that they have to make sure that their children are safe, and the only way is for them to tie them onto trees and know that they will not leave and go fall in fire or drown in the lake.

Interviewer loc:

[foreign language 00:15:41] Do you remember what happened when you were burnt?

15:36-15:40 Title ID

Jennifer, 14-years-old

Jennifer:

[foreign language 00:15:38] I was frying sesame seeds on the fire. I fell down and I could not remember what happened. After I fell, I was taken to the hospital. All here was swollen and blisters here, and my head was also hurting.

[00:16:00]

Angwech C.:

Jennifer comes from a family of 8 children and 4 of them have Nodding Syndrome. Jennifer's brother, he was going to bathe in the river because that's what the children there do and he got a seizure, and he died in the river.

Jennifer:

[foreign language 00:16:19] Each time I come to the water I can't help thinking of him. He called out for people to help him, but the people refused to come help him because they were afraid they would catch the disease. If you are a person who gets sick, and you get a seizure while crossing the river, it doesn't matter how shallow the water is. It can kill you.

[00:16:53]

Angwech C:

This is the river that is between our center and most of the community, and most of our children have to cross this river every day. Besides walking 20 kilometers to go to our center, they have to cross this river, which is very dangerous.

Suzanne Gazda:

We formed Hope for Humans originally as a place, sort of a hospice so to speak, where these children could be brought to die with dignity, so they weren't being tied to trees. But, to our great surprise we found that that really didn't happen, that the children have transformed into these beautiful young children that have come to life again through the program that we offer at Hope for Humans.

Lillian:

[00:17:52]

Have you seen? Can I help you? Nowadays, in the middle, the number of seizures started decreasing. 00:17:58] Right now as I talked, we can get like 2, 3 seizures in the day and sometimes we don't even get any in class.

Angwech C.:

18:11

We saw these children change so much just because of the nutrition that we are giving them coupled with the anti-seizure medications and psychosocial support. Them being together and just sharing love, and playing, and watching each other laugh, and wanting to laugh. Watching each other kick the ball and wanting to kick the ball. Being in a group and not being neglected is what these children need.

Lillian:

[00:18:37]

We love them every time we are together, so because of that they started gaining that, oh, they're still a human being and they're still being loved also. The sick ones are being locked inside or tied on the rope, of which we don't want here. We want them to forget all that was happening to them, and we are trying as much as possible for them to see something positive in their future.

Title 19:08-19:14

Hope for Humans invites families with children suspected of having Nodding syndrome to the center.

Female 1:

19:15

Today is an assessment day, and it's just crazy seeing how many children are out there in the community with Nodding Syndrome, and having all of them in one place and seeing the desire for help in their eyes.

filmmaker:

19:30

How many did you expect to come?

Female 1:

Around 200 plus.

Godwin:

19:35

The community still has mixed feelings about the syndrome. We all don't know where it comes from.

Female 1:

19:42

They end up outcasting these children. They're stigmatized upon, and they don't allow them to play with other children. Other schools don't even allow them to be part of their programs.

20:07-20:11 ID title

Walter, 14-years-old

[00:19:57]

Walter:

[foreign language 00:19:57] Children like insulting me. They say I'm a victim of Nodding Syndrome. I feel sad. I want to beat them up, but people stop me from fighting.

Godwin:

[foreign language 00:20:16] If children refuse to play with you, how do you feel?

Ballam:

I feel bad.

Godwin:

Does it hurt you?

Ballam:

Yes.

Godwin:

Justin, how about you. How do you feel when children refuse to play with you?

Justin:

[foreign language 00:20:35] I usually cry.

Title ID 20:36-20:42

Peter Spencer, Ph.D., FANA, FRCPath, Leading Nodding Syndrome Expert

Dr. Spencer:

[00:21:00]

I work at the Oregon Health and Human Science University. I specialize in neurotoxicology. Nodding Syndrome is certainly associated with a brain disorder, but in fact it's a much wider disorder of the human body. These children appear to be born normally but it's during their early nurturing that their ability to grow and develop normally is compromised. The condition was first described in the 1960s, that was in Tanganyika, which is nowadays Tanzania. Subsequently, it was found in South Sudan, and the largest epidemic occurred in Northern Uganda, with the first cases perhaps appearing around 1997.

This condition has evolved, apparently out of nowhere. We don't know what the cause is, but we do know in Uganda that virtually all the people developed the disease while they were in the internal displacement camps.

Suzanne Gazda:

The civil war broke out in Northern Uganda in 1986 with a rebel group called Joseph Kony and the LRA, Lord's Resistance Army.

21:57-22:04 title ID

Jolly Grace O. Andruvile, Former LRA Child Soldier

[00:21:55]

Jolly Grace O. :

The people in Northern Uganda did not want to fight, and as such, the rebel group now decided to target younger children and take them as recruits. When I was in high school I got abducted. Before I could finish my high school and join the rebel group and stayed with them for two years. When they abduct many children, then they'll pick one or two from the crowed and kill them in front of these kids. Part of you, to rise in the ranking of in the LRA, is when you've killed somebody. Because, if you shy away, then they'll start thinking, uh-uh, this one might want to escape.

[00:22:42]

I think it has been the first of it's kind, a war that was fought and 99% of the children who were taken came back and fought their own people. This war was so invisible because the outside world didn't know. It wasn't on the news anywhere. For me this was a big genocide in the world. I think it's, I would say this is one of the biggest in the world that no one talked about it. It became so difficult for the government of Uganda to fight the LRA. The LRA started abducting children in big numbers. Big, big, like every day there was abduction and, as such, the army felt they couldn't control that anymore.

Suzanne Gazda:

23:31

In order to protect the people of Northern Uganda they were initially asked and then forced to move into IDP camps where the conditions were really intolerable.

23:54-23:58

Dr. David Lagoro Kitara, Nodding Syndrome Researcher, Gulu University, Faculty of Medicine

Dr. Kitara:

[00:23:51]

Camps were really areas where huts were crowded. People were crowded in a narrow area with fairly poor sanitation and these huts, which are, they have mud all over the walls and the floors. Also, you had water flowing all over the place, and in some places the sewage was not well controlled. Yet, you were not allowed to move outside the area. The food was really inadequate. It was being provided by World Fund Program but it was inadequate. They were actually providing 60% of the calories required per person, per day.

Suzanne Gazda:

[00:25:00]

1.2 million people were forced to live in squalid conditions. Some of the camps had over 100,000 people in them. There was no education. There was no healthcare and the duration of time in these camps was 10 to 15 years for many people.

Dr. Kitara:

25:00

So, the frustration was enormous and you see the cultural degeneration.

Jolly Grace O. :

25:11

The biggest part of it is that the effect of this war brought the Nodding Syndrome disease.

Dr. Kitara:

25:17

All these children were in camps. They had camp life exposure. They were born naturally very normal until that period struck when they were in the camp and then they started deteriorating. It is in my view, that the environment where these children lived had something which was unusual, and that something which is unusual is something which contaminated the environment.

Suzanne Gazda:

In the camps we believe something may have happened to children. They may have been exposed to some chemical. Maybe it was a food that was given to them.

Dr. Kitara:

25:59

It is a man-made problem. A section of the children have been affected. A section of them have not been affected. That clearly indicates that if it was a uniform thing everybody should have been affected, and you find that there are specific locations in the region where these children have been affected.

26:25-26:28 title ID

Gulu, Northern Uganda

26:32

I have some relatives who have Nodding Syndrome. I think this also helps in driving me to work a bit harder.

Patient process going on. We need to go to the lab, which is on this side.

[00:26:47]

I don't know why the world is silent about this particular condition. I don't know why they are not looking at these children, because I think the children are voiceless. They are people from poor families. They have no representation. They have nobody to put them on the news. They have nobody to push for them. It's a question of humanity. No human is less than the other.

Angwech C. :

27:20

Thinking back when I was a child during the war in Northern Uganda, I was living in so much fear of being abducted and I remember thinking, if the world knew about the war, and if something was going to be done about it, and now we're seeing the same thing. Children with Nodding Syndrome need the world's help. We need to join hands and help these children, and not ignore these children's suffering like what happened during the war.

Dr. Spencer:

[00:28:00]

The key message is that diseases that occur elsewhere in the world have relevance, not only to those remote populations, but also have potential high impact for populations worldwide, including the United States. There was once upon a time a disease called Slim Disease had occurred in Uganda, and nobody thought much of this disease. It really wasn't worth investigating until we renamed it HIV Aids.

28:18-28:28 title ID

The Hope for Humans staff is driving from Odek to Kitgum where there are even more cases of Nodding Syndrome.

Godwin:

[00:28:42]

We are driving by and then there is this parent who has come to the center to register her kid, and then on their way back the kid starts complaining of a little bit of a swinging head. He feels like the whole environment is spinning around, so in the next minute he starts to, he gets a seizure and then falls down. The parent is trying to get him so he doesn't land so hard on the ground and hurt himself. She then lays him down a bit, and then for some time he's down there, doesn't know what is happening to him. He doesn't know where he is. He's just lying on the ground, and this happens a lot to the rest of the children who are not getting help.

29:22-29:26 title ID

Kitgum District

Angwech C.:

29:26

We're meeting with Doctor Joseph from the government hospital in Kitgum, and he's going to take us around on how he does his outreach, and show us the children in the community that have Nodding Syndrome in Kitgum.

Dr. Joseph:

[00:29:43-30:05]

This van, normally, actually the main, main reason has been designed for outreach, first of all to take drug supply and refill for the affected children. Secondly, to pick emergencies, especially those burn cases or severely ill Nodding patients. The road is so bad right from the town, we have a lot of potholes.

29:48-29:54 Title ID

Dr. Joseph Wamala, Senior Epidemiologist, Uganda Ministry of Health

30:09-30:43

This van has no four-wheel drive, no special gear, so with an emergency situation the van may not favor so much. Then, secondly, the weather these days doesn't favor us so much. So, this has been our challenge. An ambulance cannot pass, will get stuck like this one which is stuck here. How do you save life?

Hi.

Male 1:

Watch out.

[00:31:09]

Angwech C.:

We've wasted half of the day. We have not done anything. We have not reached- I really wanted- this is why we're here.

Dr. Joseph:

21:17

This is the sub-community.

Angwech C.:

To reach the community, but we cannot reach the community.

Dr. Joseph:

This is where taxpayers are. This is where voters are. Of course, they have to be represented.

Interviewer loc:

In the what?

Dr. Joseph:

In the council, so why should they be neglected outside?

31:39-21:48 Title ID

The Ministry of Health van is unable to drive to the outlying areas.  The team decides to visit a nearby village instead.

But your idea was wise.

[00:31:55]

In the fight for this Nodding Syndrome you see some kind of what? The social problem, the social needs of the community because some of those children are also being defiled. Some are being impregnated. Some are also being infected, like one who has been raped and I forgot to show you the place, has been raped by gangs and she died. On top of the Nodding Syndrome which the child has, a child is also give a pregnancy. A child is also given, what? Given HIV. A child is also abused at that early stage. You find all that burden is given on that sick child.

32:54-32:58 title ID

Scovia, Teenage Mother with Nodding Syndrome

32:59-33:04 title ID

Sandra, Scovia’s 6-month-old daughter

[00:33:11]

Anyero Flo:

[00:34:00]

[foreign language 00:34:08] I'm a peasant farmer. I have eight children. The troubles this disease has brought is that there is nothing I can do. For instance, this one also has a child. I'm to care for her child coupled with her. She was in courtship with a boy but not engaged. By the time we knew she had conceived. I don't have a future. I find it's a problem because I have to look after her until she grows up. Now, I have to look after her child until she grows up.

33:20-33:23 Title ID

Anyero Flo, Scovia’s Mother

Sandra:

[foreign language 00:34:09] She is my first born. Nodding Syndrome started with her. Then, my second and third children.

Anyero Flo:

34:18

I feel so bad sometimes I think I could commit suicide.

34:24-34:34 Title ID

The next day, the Hope for Humans team insists on visiting the children in the outlying villages.  This time, they use a four-wheel drive vehicle.

34:49-34:55 Title ID

But, even this vehicle cannot drive deep into the villages.  So, the team decides to walk.

[00:35:00]

Angwech C.:

We drove yesterday four times or three times so that we could reach here and we couldn't reach, and still today we could not give up. Every time we come to this village we are not brought to these kids or we are not shown these kids, so we had to walk here. If it hadn't been for that, we wouldn't realize that these kids were here. We wouldn't realize their condition. It's until we focus on really finding these kids and giving them the help they need, we cannot be saying we are doing something when we are not.

35:31 Title ID

Tumaungu Village

Dr. Joseph:

35:48

These are actually our lost cases.

35:57-36:01 title ID

Mark, 18-years-old

36:03-36:07 title ID

Vincent, 16-years-old

[00:36:09]

Angwech C.:

I just think this is negligence. I think this is a responsibility that should be taken. There should not be any excuses. These kids exist in our country and they exist in this village. The hospital is saying they are doing outreaches and yet they do not know that these children are in this condition.

36:36-36:44 title ID

Acayo, Mark & Vincent’s Mother

Acayo:

[foreign language 00:36:48] The children get seizures at night and sometimes I get up, but sometimes I cannot get up. If I get up, I make the sign of the cross to chase the devil away from them. But, at times I can't get up because I also feel pain all over my body.

Dr. Joseph:

[00:36:51]

This is my first time seeing them in their home because they are always represented. I have to be honest because we are only to come and do the screening at a post where it has been chosen by the community, but if they are not taken, they are always represented.

37:10-37:13 Title ID

Michael, Mark & Vincent’s Father

Michael:

[foreign language 00:37:10-37:39] There is no easy way to take them. I tie them with ropes, but there was a time when they were not tied well, and they fell down badly. Now, I have decided not to take them to the hospital. I decided it's not safe to take these children anywhere. They will now stay home.

Angwech C.:

[00:37:40]

How can these parents, how can they move to the health center? These are two kids who are very weak and this man, the last time I saw, he had to strap his kids on his back and ride them all those hours that we have driven to come here. We took like two hours to drive here and this man rode on a bike with his children. There is no way he can access any kind of services from this village. There's no way. These kids need to be in the hospital.

Michael:

[00:39:00]

[foreign language 00:38:14-39:09] Whether God gives you joy or poverty you must receive it. Until God decides to take these children from the world I will not rest. I will struggle with them as I have for the last 10 years, and almost coming to 20 years. My prayer goes first to God to bring some change to their lives. To other people, if you have the capacity to help with anything, like transporting them to the hospital, that would be good so they are not living like this at home and dying in darkness. I'd rather them be in the light, so the doctor's eyes can see them.

39:16 title ID

Kitgum General Hospital, Nodding Syndrome Ward, Kitgum District

39:36 Title ID

Luka Nyeko, LC5 Chairman, Kitgum District

Luka Nyeko:

39:30

The case of Nodding Syndrome, it's big. It's very big. I think at the moment the registered patients that we have are about 4,000.

Dr. Joseph:

[00:39:44]

These ones, they're two. A brother and a sister. They have spent over 600 days now, because they were admitted day one. She is called Aparo and the brother in Unanchan. Has never talked, has even never cried. Are you looking at that one? See the face? See the jaws? See the mouth, the teeth? So, this is their grandmom who have actually persevered for almost over 600 days because they were day one here. She has even never moved home, not even single day.

Grandmom:

[foreign language 00:40:28] He has gotten a little better. When I brought him here he was in worse condition. I'm glad I'm here to take care of him. The doctors say he still needs to get better. That is why I am still here taking care of him.

Angwech C.:

[00:41:00]

At least these people have this ward where they can at least have some kind of medication, but it's not enough. You saw the condition in there. These children have to be taken care of by their parents who do not know anything about nursing. They don't know how to treat these wounds. They are not nurses. We didn't see any nurse in there, and we feel like that is where we should do more.

At the Hope for Human Center we have caretakers, we have a full-time nurse, we have doctors that come in to asses. We feel like that's what these communities need. We do not need children with Nodding Syndrome just being in one of the wards. We need a whole center for just the children with Nodding Syndrome that is comprised of so many things that will help them.

41:37-41:43 Title

The Hope for Humans Team returns home to the center in Odek.

Angwech C.:

41:47

Hello?

Heather:

41:48

Collins, it's Heather.

Angwech C.: 41:50

Oh Heather. Hey.

Heather:

41:53

Hey, so what happened with Esther.

[00:41:55]

Angwech C.:

Oh gosh. Heather it was terrible. Yesterday she left the center in the evening to go back home like the kids did every evening, and she just go a seizure and drowned in the river but nobody knew until today afternoon. Our staff went to the river and that is when they found her body floating on the river in her uniform and in her shoes. Gosh, it was so terrible.

Angwech C.:

42:27

I just got off the phone talking to Heather, who has been here filming all the work that we're doing, and she knew Esther and explaining to her that Esther has died was just so hard. It just makes me so sad not knowing if the work we are doing is even worth it. I just want to quit my job and leave school, and disappear. I don't know what to do. I'm just so confused.

[00:42:57]

Esther was one of our very amazing kids. She was doing so well. We had so much hope in her. She was only 15. We even thought Esther was one of the kids who was going to finish from our center, go back to a normal school, finish her secondary education and go on to the university.

Male 2:

Hands down and in straight line, straight line. Class C, class B, straight line. Arms down.

Angwech C.:

43:47

The kids were so sad when Esther died.

Male 2:

43:50

[foreign language 00:43:53] How are you?

Children:

Very well.

Male 2:

43:53

Ballam, come here.

[00:43:55]

Angwech C.:

We've all seen so many children with Nodding Syndrome have died and it just is hard, but seeing how strong the kids are right now and seeing that they've not given up, they're giving us more reason and courage to go on.

Male 2:

44:09

Let's sing "Oh Uganda".

Ballam:

44:12

Oh, Uganda.

Children:

(singing)

Angwech C.:

44:20

Just thinking about what has just happened. I know I'm the Director of Operations for Hope for Humans and I want to do this. I know that we can't let this bring us down. Esther dying is just a sign that we need to work harder. We can't give up. We're going to move forward and I'm ready more than ever to work with my team to make this better.

[00:44:45]

When people moved into the internally displacement camps, they could not grow their own foods. They could not do things for themselves. We had to rely on World Food Program or any relief agencies to even have what to eat in a day, to have clothes to put on your child's back, to have where to sleep. Everything was given, so for 20 years people lost that culture of growing and being productive. After the war ended and people went back home, it was very hard to pick up and just get a hoe and go to the garden. It brought a very big dependency syndrome on the people of Northern Uganda and we're saying, your children need food. We're teaching you how to grow food, or we're teaching you how to have the right kind of nutrition.

This is class A garden. They have onions growing and they are tilling up this land so that they can transplant the onions to their garden. We're teaching our kids to be productive and be able to produce for themselves. They love to do it because they own it. They know that that's our garden. When you send them to their garden they fell proud. They want to see the garden flourishing.

[00:45:56]

Ballam:

[foreign language 00:46:15] If my body heals I want to get garden tools and plant sorghum, cassava, and sweet potatoes.

Angwech C.:

This is our piggery place. You're going to love them. They've grown so much in such a short time but they poop a lot.

46:26

When I first saw children with Nodding Syndrome it was one of the worst things I have ever seen. It was because of how badly they were doing. They were so weak. They couldn't walk. They could barely talk. A lot of doctors were saying these children's conditions was fatal but we know that that's not true. We know that these children can live.

Children:

(singing)

[00:46:56]

Angwech C.:

There is hope. These children can live like any other child. They're going to be somebody in the future. You would think they should be giving up at this point because it's so much pain, and the struggle that they go through having Nodding Syndrome but they're so alive inside. They're fighting hard. They want to live.

Lillian:

47:16

Something great is going to happen on them, in their life. That's why I'm so passionate.

Angwech C.:

47:23

Ballam is such an amazing kid. He inspires me so much. Nothing will stop him from pursuing his dreams.

Ballam:

47:32

[foreign language 00:47:43] I want to be helped so I can be cured and behave like other children, and become a doctor.

Interviewer loc:

[foreign language 00:47:43] You want to be a doctor?

Ballam: 47:44

Yes, and become a teacher so I can teach students at school.

[00:47:52]

Interviewer loc:

What else do you want?

Ballam:

47:55

I want to drive a car.

Children:

(singing)

Angwech C.:

48:03

I am so proud to be from Northern Uganda and working with my community for the children affected with Nodding Syndrome. It's working.

Children:

(singing)

Angwech C.:

48:14

The children are improving. They're so excited to have a better future and live a normal life. This is going to take more than one person. It's going to take the international community and we have to work hard. We cannot give up. (music)

48:31 title

Collines continues to work at the Hope for Humans center in Odek. 

48:35 title

She is still trying to raise money to build a center for children in Kitgum District.

48:40 title

Jennifer is excelling academically.

48:44 title

Thanks to a sponsor,  Jennifer is now attending boarding school where she gets

proper nutrition, medication, and love.

48:52 title

Grace is no longer locked in a smokey cooking hut.

48:57 title

Thanks to a donation, Grace is now at the Hope for Humans center in Odek.

49:02 title

She is getting stronger every day, learning, and making friends.

49:08 title

Despite the distance, Ballam and Justin continue to walk to the center every day.

49:14 title

They still live in a separate hut, but their father is more involved in their lives and their stepmother is becoming more accepting of them.

49:22 title

There are still thousands of children suffering with Nodding Syndrome.

49:27 title

The cause of Nodding Syndrome remains a mystery. There is no known cure.

49:32 title

A Question of Humanity

49:34 title on card held by child

Written, Directed, and Produced by Heather Angel Chandler

49:37 title on card held by child

Cinematography By:

Callan Henrich and

Heather Angel Chandler

49:40 title on card held by child

Original Score By:

 Criz Sâbre

49:42 title on card held by child

“Jamabolo” & “Awobegem” By:

 Okello Sam, founder of Hope North

Roots and Mizizi Ensemble,

hopenorth.org

49:46 title on card held by child

Additional File Video & Photography Courtesy of:

Hope for Humans,

Invisible Children,

Monique Wyatt,

Edward Echwalu

echwaluphotography.wordpress.com

49:50 on card held by child

Additional File Video & Photography Courtesy of:

Angwech Collines,

Kim Hoover,

Sally Baynton

, Samuel Olara

acholitimes.com

49:53

© Innovative Multimedia Group 2016