“We want to give hope to other parents like us – don’t stigmatise your child – our child learnt to do many things” – Luganda translation of sign held by Kellen’s parents
Kellen, Claire and Keefas’ Story
Small Steps to Big Changes
“Baby Ubuntu has united us as a family; we are now together at home, and we understand and love our child. Everyone in the family, including her siblings, loves her; there isn’t anyone who doesn’t love her, and they also care for her very well” – Claire, Mother of Kellen
“When I gave birth to Kellen, I was very unwell with high blood pressure. I lost consciousness, and so they operated on me,” Claire recalls. “When I regained consciousness, they told me that they had put Kellen on oxygen, but her situation continued to get worse. I gave birth at a hospital in Kampala and then was transferred back to Kiwoko Hospital, where Kellen was assessed and monitored. She was very floppy compared to other children. When we left the hospital, they told us to go for routine checks, so we used to go there for checkups and monitoring. They explained to us that Kellen got ‘tired’ during delivery (had birth asphyxia). At that time, she couldn’t sit; she was very weak and floppy. I first realized that Kellen needed extra support when she was 3 months old. That was when they put me in contact with Baby Ubuntu.”
Early days of illness and stigma
Claire recalls the challenges of those first few months: “One of the first challenges we faced was sickness. Kellen developed pneumonia and when she fell sick, I lost my job because we stayed in the hospital. Then she would be well for a month and then fall sick again. I was working at a school then, and the headmaster of the school saw that I was always absent. I tried explaining to him that my child was sick, but he never understood. Most people don’t understand the challenges faced by children with disabilities. Although we always tried our best as parents, sometimes we failed to get food for her to eat. She likes Matooke (Bananas), rice, Irish potatoes, and fish and beef soup, but I couldn’t afford this every day. People in the area would talk about me and say, ‘she sacrificed her child to evil spirits,’ and other things like that, but I understood that my child wasn’t bewitched, or a sacrifice for wealth.”
“I understood that my child wasn’t bewitched, or a sacrifice for wealth.”
Kellen’s father, Keefa, also recalls the difficult journey they have been on. “Many challenges still exist, especially when she falls sick, we face transport challenges, and she must be carried all the time. You find that as parents, we want to go to work, but we don’t have anyone to care for her… you can get someone to stay with her, but [they] still don’t know how to care for her… that makes us fear leaving her with other people, or we end up moving with her everywhere [ourselves].”
The beginning of understanding
“I have learnt many things from Baby Ubuntu,” says Claire. “The first training session was called ‘Katutandike,’ which translates as ‘Let’s get started,’ and in that session, they teach about the possible causes of your child’s condition. For example, they ask you about your knowledge of disability, and what we understand by the term ‘disability.’ I got that knowledge and understood that my child wasn’t bewitched, as people say, but that she has a disability.
“The second group session was ‘Know your child,’ and this is the session I loved listening to most because of what I learnt about my child’s needs. They told me, ‘Focus on what you want your child to do.’ During that time, she could just lie down, so I had to stick to the fact that I wanted her to sit, so I could help her to sit supported in the corner of the room in my house. Then after achieving the first goal, you focus on the next step for your child. So, we continued in that way, and she learned how to sit, and as of now, she sits well. My child was among those children who were very weak, and her neck was floppy and could fall in any direction. I had no hopes that she would sit and people are now surprised that she can sit.”
Keefa agrees, “We are thankful that Baby Ubuntu extended these trainings to us because now we are hopeful that Kellen can achieve new things as time goes on. The training has made us regain hope again because at least we understand that our child isn’t bewitched or sacrificed. With the training, we have observed improvements in Kellen, and we learn new things each time we attend that are tailored to her needs.”
Keefa, Kellen’s father, sharing his message about disability with the world
Creating change through learning together
Claire also reflects on the value of connecting with other parents: “As a parent, when I interact with other parents, I see that my child has made great improvements. When you interact with other parents, you talk about different things and restore hope among us as parents, and that makes a real difference.”
Keefa agrees that these connections have changed how they cope: “The difference it has created is that you never lose hope, and when you see the situation of another child, you gain strength. You might see another child’s situation or condition, and when you compare it to your child’s, you see that their condition or disability may be worse than your child’s. Second, when you meet them, you become hopeful that you aren’t alone in the situation, because many children like that are being born every day…and when you see other children with a similar condition who can’t eat, when your child eats, or the other child is weak and can only lie down, but your child can sit, you see that it’s a great milestone for your child and it helps you gain more strength and put more effort into helping and caring for her.”
When asked what they would say to other parents who are just starting this journey, Keefa said:
“My advice would be to never lose hope because when you receive training and understand … you gain strength and become hopeful…you understand what you want your child to be, [and] that’s exactly what your child will be, because Baby Ubuntu can teach you everything, help you go through different steps, guide you on what to do, and in so doing, you gain strength, hope, and then you start loving your child.”
Claire expanded on the difference Baby Ubuntu has made for her family: “Baby Ubuntu has united us as a family; we are now together at home, and we understand and love our child. Everyone in the family, including her siblings, loves her; there isn’t anyone who doesn’t love her, and they also care for her very well.”