By Brandon Colby
If you are reading this, you have a direct opportunity to help save the lives of thousands of children.
My name is Brandon Colby and I’m 21 years old. I’m from a small rural town in New South Wales, Australia. After leaving high school, I left to travel the world with little plan of the road ahead. Now, almost 1.5 years later, I find myself in Northern Uganda, leading a project to help save the victims of one of the worlds most heartbreaking diseases. I don’t know how, and I don’t know why I’ve been fortunate enough to be placed in this position, but for some reason I feel as if I was put on this earth for this one particular moment. If you have just a few moments to spare, it would mean everything to me if you read the following sequence of words.
Two months ago, I arrived in Northern Uganda to start working for a local grassroots NGO called Hope Centre Uganda. Throughout my time documenting their efforts and achievements, we stumbled across the current situation facing the Nodding Syndrome victims in Uganda. When the issue came to us, we discovered that nothing was being done and that if we wanted to save these children, it would be entirely up to us. It has now come down to this moment. With all our efforts compiled into two documentaries it has come time to share this epidemic with the world.
Before going into depth about what Nodding Syndrome is, I want to share with you all briefly about what Nodding Syndrome feels like. Throughout the duration of time I spent in Gulu, our team from Hope Centre Uganda visited these Odek Nodding Syndrome Care Center three times. Over the course of these visits, we stayed the night once, conducted several home-visits, showed them our documentary, conducted music therapy, played sport games and broke bread with them. Now, this center is a 4 hour drive from Gulu. Whilst driving out there, you find it hard to believe that these children live so far away from any form of professional care. When I was with the children, I made a conscious effort to be with them as much as possible. I didn’t want to sit on the chairs provided, I wanted to sit on the floor with them. I didn’t want any special food, I wanted to eat the food that they were eating. I didn’t want to sleep in a seperate dormitory, I wanted to sleep in their dormitory. Through this, I feel like I really connected with the children and began to form an understanding of what it’s like living with NS. What I found is that these children have a sense of dignity, rationality, integrity and a genuine awareness of themselves and the world around them. They are normal human beings just trapped in a misshaped bodies with ever diminishing mental capabilities. For me, the most heartbreaking aspect of all of this was looking into their eyes and observing the fact that they were very much aware of their own ever-increasing limitations.
Nodding Syndrome (NS) is a neurological condition with unknown causes which affects the brains nervous systems. It affects an estimated 10,000 children in Eastern Africa. The onset of the disease usually occurs between the ages of 5-15 years old. These children affected, display a ‘sleepy’ appearance and appear to ‘nod off’ and lose contact with their surroundings. These episodes are in fact seizures. During times of seizures, they cannot control their body and are prone to accidents – from falling into fires to drowning in bodies of water. This causes disfigurement or even death. Each seizure (and there can be many each day) diminishes the child’s mental capacity and over due course, stunts physical growth. For example, a 13 year old child will often appear to be six. Eventually, children lose control of their bodily movements and as a result cannot perform basics acts of hygiene, feeding and/or dressing. This requirement for full-time care and supervision means parents must cease work thus being unable to tend to crops and feeding their families. Because there are no safe places of care, parents a thus frequently forced to tie up their children to posts/trees for their own safety to ensure they do not wander into dangerous situations.
The Odek Nodding Syndrome Care Centre was originally founded by an organisation called Hope For Humans in 2012, which ran out of funding last year. In our refusal to stagnate, or deny the community the services it needs most, Hope Centre Uganda has created a special needs intervention project which aims to provide therapy and care for these children. Additionally, counselling and capacity-building for the centre and the surrounding community is a part of the project. This concept is designed with the mission for the Nodding Syndrome Care Centre to keep it’s doors open and continue to help affected children, medical researchers and the surrounding community in the struggle to understand, cope and treat Nodding Syndrome.
Someone recently told me that single handedly a person can do nothing, but together anything is possible. It’s an incredibly overwhelming feeling knowing that you are responsible for the outcome of others lives. I desperately need your help. To donate, visit tinyurl.com/helpHCU
If you are financially unable to contribute, your impact can be simply sharing this video in the hope that another will donate. If we’re unable to raise the funding these children will be forced to return to their communities which will result in an eventual premature death. The fate of these children lives rests within this very request. This is a call to anyone out there who has a heart. I need as much help as I can get. Thank you for your time.
Watch and share the short mini-documentary here:
Watch the full 25 minute documentary here: