Rainbows and Smiles Foundation shared Kurhula’s story with Know The Glow, and we are grateful to be able to share Connie’s experience in her own words.
20 September 2026 (Sunday) Kurhula #Retinoblastoma
(Age: 18 months old)
Rainbows and Smiles Foundation sat with Connie in the counselling room as she shared her experience. She had been looking forward to telling Kurhula’s story. She believes speaking about everything they have lived through is part of her healing. She also wants to educate others because she had to push so hard before her son received the care he needed.
This is Connie’s story, in her own words.
My name is Connie, and I have two children, my eight-year-old and Kurhula, my little boy. I was so excited when I found out I was having a son. He was my husband’s first boy. When Kurhula was born, I thought he was the most handsome baby I had ever seen. He looks like my mother, his Gogo. I loved everything about his beautiful little face.
At six months old, Kurhula became unwell. He had a fever and a rash on his hands and feet. A doctor friend suspected hand, foot and mouth disease, and he spent a week in hospital. At his follow-up appointment, we were told that he was fine.
The following week, I noticed a small light inside his left eye. It was easiest to see at night. I showed his father, and he could see it too. As the days passed, the glow became bigger. During the day, his eye looked normal, but at night the light was clear. His father tested his sight using Kurhula’s bottle and toys.
Our baby could not see them with that left eye.
I took him back to the private hospital. The doctor looked at him and said that he seemed fine. I begged him to close the blinds because the glow appeared in darkness. I asked for a referral to an ophthalmologist, but he thought I was worrying too much. I knew my child. I knew something was wrong.
I became angry and demanding because nobody was listening. The referral was made for the following week, but I called and insisted that he be seen sooner. At the ophthalmologist, I was again told that nothing appeared to be wrong. I begged the doctor to use a special machine and look behind Kurhula’s eye. I sat in reception and refused to leave. I had recorded the glow on my phone and sent the video to the doctor.
After drops were placed in Kurhula’s eyes, the doctor examined him again. I saw his face change. His face dropped, and my heart dropped with it. I said, “Please do not lie to me. Tell me the truth.”
Further examinations and a CT scan followed. We waited for hours. Eventually, the doctor told me that my son had retinoblastoma, cancer of the eye. I had never heard of such a thing. He told me that Kurhula’s eye needed to be removed urgently. If we waited, the cancer could spread to his brain and become fatal. I cried uncontrollably. I kept thinking, “What if my baby dies?”
My father wanted us to begin with traditional healing. Our culture and family traditions are deeply important to us. A doctor friend spoke respectfully about this, but she was also very clear: Kurhula needed urgent hospital treatment. I went to church, prayed and made my decision. I would take my son to the hospital.
My family was hurt because I had not followed our traditional ways first. While Kurhula was admitted, nobody called me. I felt very alone. Later, my father and husband performed cultural rituals to honour and appease our ancestors.
My husband struggled with the decision to remove Kurhula’s eye. Our son was so beautiful and perfect. He worried about the operation and how Kurhula would look. After doing his own research and understanding the danger of the cancer spreading, he agreed.
Kurhula’s eye was removed in October 2025. Seeing my tiny baby after surgery broke my heart. When I video-called my father, he was deeply emotional too.
Today, Kurhula is still my cute, adorable boy. Sometimes he touches the place where his eye was. One day, I will explain the journey we have walked together. He will continue with follow-up care until he is six years old.
Because I refused to stop asking questions, Kurhula’s cancer was found at Stage 1. He did not need chemotherapy. If I had remained quiet, the cancer may have spread to his brain. Sometimes God allows us to walk through something so that our story can help somebody else.
My message is simple: a mother knows her child. Please listen when she says that something is wrong. If you notice a strange white glow in your child’s eye, especially in photographs taken with a flash, please do not ignore it. Look back at older photographs too, as the glow may already be visible. Follow up and keep asking questions until your child’s eyes have been properly examined.
**Connie, you trusted your instinct and refused to give up. Your love and determination helped save Kurhula’s life. By sharing his story, you may help save another child too. Thank you**
