The daily challenge of raising a child with Type 1 diabetes

When Christine Mushimiyimana noticed her three-year-old daughter was losing weight, she initially thought something was wrong with the way the child was being fed. Briella Feza Africa had previously been a healthy, slightly chubby child. Then she began losing weight rapidly. She drank unusually large amounts of water, urinated frequently, including at night, and became so weak that she sometimes struggled to get up. “It reached a point where she would sit down and say she wanted water. She was eating, but she kept losing weight, and at night she started wetting the bed, something she had never done before. I realised this was not normal and took her to a clinic,” Mushimiyimana recalls. Tests showed that Briella’s blood sugar was dangerously high. She was later diagnosed with Type 1 diabetes. For Mushimiyimana, the diagnosis marked the beginning of a demanding new routine. Her daughter would need insulin for the rest of her life, while the family had to learn how to monitor her blood sugar, administer injections, manage food and recognise what to do when her levels became too high or too low. ALSO READ: From grief to action: A mother and daughter’s fight against diabetes in Rwanda At first, even giving an injection was frightening. “I had never imagined that I would have to inject my own child. I was taught how to do it, but it was difficult to accept and to learn. You are looking at your child and thinking about whether you are doing it correctly, yet you know that if she does not get insulin, her life is at risk,” she says. For families living with Type 1 diabetes, much of the work happens away from the hospital. It takes place at home, at school and wherever a child happens to be. Learning to live with diabetes Mushimiyimana’s experience is shared by other families who have had to adjust to the demands of managing the condition. At Butaro Health Centre in Burera District, Charlotte Mukamurenzi has spent the past two years learning how to care for her young son, who was diagnosed with diabetes when he was two. The diagnosis initially frightened her. She had heard people describe diabetes as a disease that affected older people and did not understand how a child could develop it. Her son’s condition also affected his schooling. He sometimes needed food at specific times to prevent his blood sugar from falling too low. At one point, she had to prepare porridge before he went to school and rely on teachers to help him eat at the appropriate time. “There were times when he would go to school and become unwell because of the long period before eating. I would wake up early, prepare porridge and food for him, and the teachers also helped him,” she says. “It was difficult because I did not have much money, but we had to find a way to make sure he could continue going to school.” Over time, the family began to understand the disease better. Mukamurenzi says meeting other parents and children living with diabetes, organised by Partners in Health last week, helped her realise that her son was not alone. That support has been an important part of the work of Partners in Health, which supports people living with chronic illnesses in several parts of Rwanda. Symaque Dusabeyezu, an NCD programme manager at Partners in Health, says support goes beyond providing medicine. Families may also need help with transport, food, social support and keeping children in school. “Some families are very poor and live far from the health facilities where they receive treatment. If a child needs medicine but the family cannot afford transport, we help them get to the hospital so that they do not miss treatment,” Dusabeyezu says. “We also look at the family’s situation and, where necessary, provide social support because diabetes affects the whole household, not just the patient.” ALSO READ: More Rwandans diagnosed with diabetes as care expands For young people, he says, the support can also include vocational training and basic equipment to help them develop skills and become more independent. The child is more than the diagnosis For Dr Etienne Ntabanganyimana, a specialist in kidney disease working with Partners in Health, one of the biggest challenges is helping families understand that a child with diabetes can still grow, study, work and build a normal life. Parents, he says, need practical information about managing blood sugar, recognising emergencies and helping children gradually take responsibility for their own care. “Parents need to understand what happens when blood sugar goes too low or too high and how they can respond. As children grow, we also have to help them become independent,” he says. “A four-year-old cannot be expected to manage everything alone, but as the child grows, we need to teach them so that eventually they can take care of themselves.” That message is particularly important because misconceptions about diabetes can leave children feeling different from their peers. Mukamurenzi remembers initially believing that her son had a disease that was somehow unusual or foreign. She later encountered other children living with diabetes and realised that her family was not alone. She says the change in understanding brought relief. “I used to cry and wonder what would happen to my child. But when I came for the training and saw other children with diabetes, I felt encouraged. I realised that we were not alone and that these children can grow. My son is now four, he is going to school and he is doing well,” she says. ALSO READ: Walking 7,000 steps prevents heart diseases, cancer and diabetes, study finds A mother’s daily routine For Mushimiyimana, managing her daughter’s diabetes has meant reorganising almost every part of family life. She learned to monitor her daughter’s blood sugar before school and prepare food that would help maintain stable levels. She also had to work closely with teachers so that the child could receive appropriate care during the school day. As Briella grew older, Mushimiyimana began teaching her how to understand her own condition. “At first she would ask why other children could eat certain things and she could not. I had to explain the truth to her. I told her that she has diabetes and that there are things we have to be careful about, but that does not mean she cannot live like other children,” she says. The emotional burden was sometimes as difficult as the medical one. Mushimiyimana says there were periods when she barely slept because she worried about her daughter’s blood sugar. The costs of food, medicines and monitoring equipment also put pressure on the household. She eventually found encouragement through other parents of children with diabetes. “Meeting other parents changed me. I saw people who had children who had lived with diabetes for many years, and they were growing up, going to school and living their lives. It gave me hope. I started to understand that my child can also grow up and have a good life,” she says. When poverty becomes another challenge The medical demands of Type 1 diabetes can become particularly difficult for families with limited incomes. Hakizimana Epimaque, 35, from Rwinkwavu in Kayonza District, was diagnosed as a young person after years of unexplained illness. He remembers being transferred between health facilities as doctors tried to establish what was wrong. ALSO READ: Lifestyle control: The key to managing and preventing diabetes Eventually, his condition became so severe that he fell into a coma and woke up in hospital several days later. The diagnosis was difficult for him and his family to understand. At the time, he says, there was little information available to them, while managing his diet and treatment was challenging. He also recalls how some people associated his illness with causes other than diabetes, adding to the confusion surrounding the condition. Over the years, however, treatment and knowledge improved, and so did his understanding of how to manage his health. Hakizimana says the experience taught him that people living with diabetes need to learn about their condition rather than allowing it to dictate their lives. “Diabetes is a disease you can live with. It does not mean that your life has ended. If you understand the advice given by your doctor and take responsibility for your treatment, you can work, build a family and pursue your goals like anyone else,” he says. Helping families carry the burden For Partners in Health, the approach is not limited to clinical care. Dusabeyezu says the organisation has worked with families facing financial difficulties, including helping vulnerable patients with transport and other social needs. ALSO READ: Type 1 diabetes no longer a death sentence – activist The organisation also supports young people through vocational training and has worked with Zipline to use drones to improve access to medicines for patients in hard-to-reach areas. The aim, he says, is to reduce circumstances that can make it difficult for patients to stay in care. Diabetes requires consistency. Missing insulin, medication, monitoring or follow-up can have serious consequences. For children, the responsibility often falls heavily on parents, who must balance treatment with work, school and household needs. Mushimiyimana says there were periods when she struggled to keep up with work because of the demands of caring for her daughter. She had to respond to calls from school, monitor her child’s condition and find money for food and medical supplies. “It was a struggle between the child’s health and my work. Sometimes I had to leave work because something had happened at school. There were also times when I needed money for testing and other supplies and did not have enough. It was stressful, but I kept going because I knew my child depended on me,” she says. A life beyond diabetes As children grow older, health workers and parents want them to move gradually from being completely dependent on caregivers to understanding and managing their own condition. Ntabanganyimana says families should avoid treating children with diabetes as fragile or incapable. “They need to understand that having diabetes does not mean a child cannot do what other children do. We have people who have lived with diabetes for many years, who work, have families and live normal lives. The important thing is helping the child understand the disease and giving them the support they need to manage it,” he says. ALSO READ: Diabetes in my family: Lessons I wish everyone knew For Briella, that process has already begun. She has learned to recognise her blood sugar readings and, as she grows, her mother is gradually teaching her how to take greater responsibility for her treatment. The change has also brought some freedom back to the family. Mushimiyimana says she can now attend social events and sleep more peacefully without constantly fearing that something will go wrong. Her daughter is growing, going to school and taking part in activities like other children. That is the outcome the families and health workers are working towards—not simply keeping a child alive, but helping them grow into an adult who understands their condition and is able to live with it. For Mushimiyimana, the advice to other parents is straightforward: seek medical care early, follow professional guidance and do not isolate a child because of diabetes. “Parents should take their children to the hospital as soon as they notice something is wrong and follow the advice of the health workers. But they should also remember that the child is still a child. Let them play, let them learn and let them live. Do not make them feel that they are different from everyone else,” she says. The parents and children featured in this story met at a Type 1 diabetes patient and family camp organised by Partners in Health Rwanda in Kabuga, bringing together young people living with the condition, their caregivers and health workers. The camp focused on practical aspects of everyday diabetes care, including insulin use, blood sugar monitoring, nutrition, physical activity and recognising emergencies, while also giving families an opportunity to share their experiences and learn from one another. Such family-centred support forms part of Partners in Health Rwanda’s broader work with the Ministry of Health to strengthen care for diabetes and other chronic conditions, particularly for people who face barriers to accessing specialised services. For families learning to live with Type 1 diabetes, that balance matters. Treatment keeps the disease under control, but support at home, understanding at school and confidence in the child help make life beyond the clinic possible.

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The daily challenge of raising a child with Type 1 diabetes