Desire’s Story: A Chance to Thrive

Desire Agaba is a 10-year-old girl born on 20 June 2016 to Niwagaba Dickens and Ainembabazi Loy. She is the youngest of four children, all girls, and lives with her family. Desire’s story began with an unexpected tragedy before her birth. During her mother’s final antenatal visit, her parents were involved in a motorcycle accident while travelling to the hospital.

Recounting the experience, Desire’s father, Dickens, described the uncertainty that followed. “My wife and I left home on a motorcycle to go to the hospital. We got into an accident. After several days, I regained consciousness and found myself on a hospital bed. I asked about my wife and was told that she was also admitted. Three days later, I was informed that she had delivered, but the baby was weak,” he recalled.

Desire was born prematurely. According to her mother, she had visible bruises on her shoulder, forehead, and back at birth. The family subsequently faced the challenge of understanding and responding to Desire’s developmental needs. As Desire grew, her family observed that she had difficulty controlling her head. Concerned about her development, they sought medical attention when she was approximately one and a half years old. According to the family, Desire received medical care and subsequently made progress. One significant improvement was her ability to hold her head upright, something she had previously struggled to do. However, accessing continued healthcare and support has not been easy. Financial constraints have prevented the family from returning to the hospital for further assessment and follow-up care. Despite these challenges, Desire’s parents remain committed to providing for her and meeting her daily needs.

“We do what we can,” her mother explained, reflecting the family’s determination to care for their daughter despite their limited resources.

For Desire’s father, caring for his daughter has also meant developing a close bond with her and learning to understand her needs. He explained that he does his best to ensure she is comfortable and has what he can provide. “I make sure she has what she needs. We have developed a strong bond, and I understand what she wants. I try my best to provide for her. She likes soda, and I make sure she gets it whenever I can. That is her share, just as the other children go to school,” he explained.

His words reveal a father’s commitment to his daughter, but they also highlight a difficult reality: Desire is not attending school, and her father fears that she may never have that opportunity. His concern raises an important question about the educational opportunities available to children with disabilities and the support families need to help their children participate in learning.

Desire’s story highlights the challenges families face in accessing healthcare, rehabilitation, and educational opportunities for children with disabilities. Financial constraints can limit access to essential services, leaving families struggling to meet their children’s needs. Every child deserves dignity, inclusion, and an opportunity to learn and develop their abilities. Desire’s circumstances should not determine her future. Appropriate medical assessment, rehabilitation, inclusive education, and family support could improve her quality of life.

Desire deserves the opportunity to reach her full potential. Supporting her is a shared responsibility.