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 |
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