I sat on the staircase leading to the main building of Bless a Child, a non-governmental organisation that runs a home for children with cancer — it was a good spot to observe the comings and goings of both visitors and residents.
“Hello! I am Brian Walusimbi,” said a youthful man who appeared almost from nowhere and plopped himself on the staircase next to me. I shook his hand and I jumped straight into a conversation.
“I am here to interview the executive director,” I told him. It was a busy day, a number of volunteer workers from Global Health Corps US and Uganda were visiting the home to donate much needed stuff.
“I am the executive director of Bless a Child,” Mr Walusimbi replied. For a few seconds I thought it was a joke. I was expecting to meet an elderly person.
Walusimbi, 37, is cheerful and unassuming. Nothing about him gives away the fact that he spends all his time with children, more so, those suffering various forms and stages of cancer. He not only runs the cancer home, he founded it.
Bless a Child is a registered charity, overseen by a board of governors. On a day to day basis, Walusimbi oversees its running by co-ordinating the different operations and the employees and also takes care of the publicity and fundraising both locally and internationally.
As we are chatting on the staircase, a young girl, whose lower face is covered with a scarf, walks by. Walusimbi calls her and asks her to sit next to him. The girl, about 12 years old, obliges without saying a word and continues to munch on a biscuit. “She has a tumour on her mouth and she feels shy about it, so we encourage her to cover up,” he explains.
After a few minutes of talking to the girl, Walusimbi invites me into his office, where a voluminous book titled Nursing Care of Children and Adolescents with Cancer and Blood Disorders is prominently displayed on a bookshelf. For an instance, the book makes me think that he is an oncologist.
“I am clown,” Walusimbi tells me with a disarming smile. It seemed so unreal that he was not an oncologist as he effortlessly rolls off scientific jargon about cancer.
Of course this has to do with my assumption that all clowns at all times are wearing grease paint makeup that hides their real faces; wear large wigs with brightly-coloured hair, and baggy, padded clothing. I also expect all clowns to be clumsy people.
Only one picture of a clown hangs in Walusimbi’s office. I look around the office to see anything clownish, but all I see are pictures of him with children at the home or with their families.
We settle down for the interview and I am ready for any surprise.
Starting a cancer home
In 2007, Walusimbi’s troupe of entertainers was invited to perform at a charity show in aid of the treatment for children at the Uganda Cancer Institute at the national referral hospital, Mulago. He was hesitant at first, because he thought he had done enough to raise funds for charity organisations like the Red Cross and other humanitarian organisations.
He, however, decided to take up the challenge and performed for the sake of the 250 children on treatment. The show was such a success, it secured full sponsorship for the treatment of 10 children from individuals in the audience.
As he was leaving the institute’s auditorium after the performance, a young boy suffering from Burkitt's lymphoma (a cancer that causes the rapid enlargement of the head) approached him and asked for money to pay for transport costs to Gulu in northern Uganda for him and his mother. He gave him the money, but as he walked around the hospital, he noticed that there were other children sleeping on the floor as all the beds were occupied and the cancer ward was congested.
“I was shocked to see children with tumours in their eyes and other parts of their bodies, just fighting for a chance to live. I cried. I thought cancer was a white man’s disease, more so not for children,” said Walusimbi.
The Uganda Cancer Institute data shows that children make up to 40 per cent of new cancer cases nationally. On average, UCI receives 1,700 cancer patients annually, implying that 700 of them are children.
The cancers that affect children mostly occur in the developing cells like the bone marrow, blood, kidneys and nervous system tissues. Burkitt's lymphoma is the most common type of cancer in children. However, the causes of most cancers in children remain unknown.
The concert that Walusimbi held at UCI was a turning point. He learned that children sleeping on the hospital floor without mosquito nets risked contracting malaria which could kill them because of their compromised immunity during treatment, while those from far flung districts most times did not complete treatment because their families were too poor to travel to Kampala for treatment.
Cancer patients on chemotherapy treatment have to visit the hospital once a month and it is not affordable for poor families.
Walusimbi then decided to start a home to cater for children from disadvantaged families afflicted by cancer. First, he mobilised personal finances and leased a piece of land. He developed the land with the help of Barclays Bank. Currently, the home accommodates 60 people: 30 children on treatment and one guardian per child. He called the home Bless a Child and it works in collaboration with the Cancer Institute at Mulago Hospital.
“When we discharge patients who live very far, but have to continue with treatment, we ask them to seek help at Bless a Child home, where they are provided with transport, meals, accommodation and some treatment costs,” said Dr Joseph Lubega, director in charge of children at UCI.
Before starting the home, Walusimbi worked as a youth volunteer at Watoto Church before venturing into the fresh juice business. The business thrived for a while but later collapsed and he went back to doing odd jobs for survival.
He is a graduate of Information Technology, although he is quick to add that he was forced into studying IT by virtue of his admission into the course at university, and not personal interest.
The first time he ever used his IT skills was when he took an offer to entertain pupils at a primary school. It was a desperate move for him since he only had $3 to his name. He made a quick Internet search on clowns and what clowns’ work entails.
He still rates that performance as the worst he has ever done, but the school back then must have been very impressed and happy with his efforts because they recommended him to other people. That is how he started his career in clowning.
He has since entertained children of VIPs and the even Uganda’s First family.
It has not been all rosy though. He recalls 2012 as being one of the worst years in his charity work. The donations were simply not coming for even buying food and the government had run out of cancer treatment drugs.
“I suggested to the board of governors that we should close the home, but my colleague Peter Genza encouraged me to keep it open,” he recalls.
“Children were being turned away at the Cancer Institute, but because they were staying at the home, they died here. We lost 17 children in two months. We did the things we did not know how to do — washing bodies…,” says Walusimbi.
“I was so tired and frustrated and we had to look for funds to transport the bodies to their respective villages for burial as quickly as possible or else they would have decomposed. That is how I found myself offering salsa dance lessons to raise money,” he says.
On the challenges of getting funds for the home, Walusimbi says: “Ugandans are really good people. We have received donations of all kinds from all kinds of people, including those who just drop in and give us a bunch of bananas. We value every donation because they keep us going. Our doors remain open. We even have children from the neighbourhood coming in to play with the cancer patients who have gained some strength, and this gives them hope for a normal life,” he adds.
Walusimbi says he earns his upkeep through private performances and his dance lessons. These are separate from fundraisers and charity events for the home.
Life in the home
Challenges still abound. In the children’s living quarters, Cathy (not her real name) is confined to her bed. She has a large lump on her back and can neither walk nor sit. On her bedside is a bible which she spends most of the time reading.
Mr Genza explained that the cancer institute removed her from the treatment list and gave her about three weeks to live. It is now close to two years and she is still alive, surviving on herbal treatment provided by the home. Such cases are common.
With no definite time frame for cancer treatment and recovery, Bless a Child home started an informal school for the children on treatment. Volunteer teachers keep the children busy with simple arithmetic and English lessons.
A visit to the home is not for the faint-hearted — every child is suffering in one way or another.
Mr Genza had forewarned me against showing emotions because it affects the children. But how do the caregivers deal with the situation on a daily basis? I inquire.
“I must get away from this often, and so I teach and dance salsa. I love dancing and when I was younger my dream was to become a Micheal Jackson of sorts. I also engage in clown work on weekends where I must talk about children and cancer,” he said.
Over time, the finances have improved and with the resources, they run two other homes; in Gulu and Kampala with a total of 1,000 patients accessing services including hospice and bereavement support. A third home is scheduled to be opened soon in Kampala.
Once a year Walusimbi holds what he calls a “smile again party” at the cancer institute to bring just a little more happiness into the children’s lives hoping they can forget their pain even if it is just for a few minutes.