Kask & Conservatory master's student spends one month in Kampala (Uganda)
Daniil Zozulya, a photography master's student at Kask & Conservatory in Ghent (Belgium), will spend a few weeks in Uganda as part of his internship. During his stay there he will visit some of Child-Help's projects. He regularly sends out blog posts and pictures to share his impressions.
Kampala offers a lot but demands a lot in return. It's a bustling city, and there's constantly something happening all around you. I barely arrived and immediately got to work. There are many challenges, and it will be difficult to overcome them all. Nevertheless, I am confident and feel ready to tackle them. Upon my arrival, I meet Benjamin. He has been working at SHAU for the past 4 years. He gives me a tour of the house that welcomes mothers from all corners of Uganda with one hope: to learn how to care for their child with Spina Bifida or Hydrocephalus.
SHAU is an organization dedicated to combating all forms of discrimination against children with Spina Bifida and/or Hydrocephalus. They like to describe themselves as an "umbrella" because SHAU collaborates and works extensively with other regional and international organizations (Child-Help being one of their partners), covering every sector. One of their most significant battles is for inclusion. Beyond providing care before, during, and after various surgeries, they also strive to make parents and children understand that despite their disabilities, there are ways to be "useful" in society by pursuing various professions. SHAU is thus advocating for an inclusive society where these children are accepted for who they are in all existing facets.
Here I am, faced with my first case of Spina Bifida. We begin by discussing the consequences of this condition while providing care to the child. What I see leaves me stoic. I felt a deep sense of compassion for the mother who has to confront this battle every day. The goal of the SHAU members is primarily to restore hope to these mothers. Their work starts from the hospital (where the mothers await surgery for their child) to post-operative treatment.
Today, I meet 5-year-old Tawfiq, who has Spina Bifida, and his mother. I learn that one of the consequences of the disease is urinary and colorectal problems. Tawfiq means "success" in Arabic. His name takes on even more significance given the real condition he has been facing since birth. The "House of Hope," as named by SHAU, exists for this very reason – to welcome, care for, and prepare these children to lead a normal life despite their disability.
To address the urinary and colorectal problems, a delicate and essential procedure must be performed to prevent any infections with serious consequences. I am witnessing the insertion of a catheter into the child's urethra to extract all the urine from their bladder. It's explained to me that many mothers in this situation are often very frightened and need to learn how to manage their stress and emotions to become self-sufficient. The training takes time. It may seem simple, but it requires keeping one's composure and following the steps slowly. Of course, the child cries and struggles a bit, but it's a matter of getting used to it. This procedure is something he will have to learn and perform for the rest of his life when he reaches adulthood.
Later in the day, I meet a father and his child named Steven, but he's affectionately called Stevie by the SHAU team. They have come for the same reason as Tawfiq's mother – to perform urinary drainage using catheter insertion. Stevie will turn fifteen in November, and his dream is to become a doctor. Already possessing the qualities of a leader, he seems to be handling his challenging situation remarkably well and appears to have achieved a level of self-acceptance that is quite remarkable and inspiring. Meeting him on my first day in the field has been a life lesson I won't soon forget. In my view, Stevie embodies a beautiful example of resilience. He constantly smiles despite the difficult progression of his body post-operation. I'm told that he may have to have his legs amputated due to a severe infection in the lower part of his body, and there is no other choice but to proceed with another operation.
Tomorrow morning, he will have to travel to CorSu, about a 5-hour drive from Kampala, to prepare for the surgery. In cases like this, the child is supported by a psychologist to ensure they are in the best possible mental and emotional state.
On October 6th: World Cerebral Palsy Day. For the occasion, we are attending a meeting where numerous associations, each fighting for a specific cause, participate. The primary goal of the meeting is to further raise awareness about spina bifida and hydrocephalus. The national coordinator, Ruth, is unable to attend the meeting, which is why she delegated the important role of substitute to me. Today, in front of an informed audience, including mothers and their sick children, I will have to deliver a speech representing SHAU's fight.
There are more than 17 million people across the world living with cerebral palsy. Another 350 million people are closely connected to a child or adult with cerebral palsy.
Cerebral palsy is a physical disability that affects movement and posture. Many people with cerebral palsy have other related vision, hearing, communication and mobility needs. Its impact can range from a weakness in one hand, to almost a complete lack of voluntary movement.
- It is a complex disability:
- 1 in 4 children with cerebral palsy cannot talk
- 1 in 4 cannot walk
- 1 in 2 have an intellectual disability
- 1 in 4 have epilepsy.
House Of Hope – Information Session
My first weekend since my arrival in Kampala. After an introductory first week, I take the time to rest and reflect on what I've seen and experienced. On this sunny Saturday, we stay at the House of Hope for an information session conducted by Winfred. SHAU includes several information sessions, meetings, and question-and-answer sessions on spina bifida and hydrocephalus in its project. About ten people show up this morning and patiently await the start of the session.
Among these individuals, I see fathers, mothers, and children of all ages, all affected by this condition. Before I can start capturing some images, I take the time to introduce myself to the people. This helps them to get accustomed to me and ensures that I won't disrupt them during the class. Once a connection is established between them and me, I get to work by attending the session. The program covers various topics such as "how to take care of oneself" and "the importance of a healthy diet."
Entebbe - Home Visit
Exactly 61 years ago, Uganda gained its independence. This new week in Uganda starts with a public holiday. I rush out of my hotel to see how Ugandans are celebrating this significant day in the country's history. I was somewhat surprised by the lack of enthusiasm generated by this special day. I discuss it with the team members, and they also appear to be largely unconcerned about the day's significance. The day's program is to visit the famous Lake Victoria. Before we hit the road, Ruth informs me that she wants us to visit two young individuals who live in Entebbe, both of whom have unique stories to share with me. This is how we set off for the home of a young man named James.
We drive for about forty minutes to James' home. James lives with his family in a house built by his father in the early '90s, situated along a dusty path frequented by many boda-bodas and cargo trucks. Accompanied by Benjamin and Dora, I take the time to get to know this 19-year-old young man with big dreams.
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