When Ermias Kibreab’s son, Bisrat, was diagnosed with bilateral retinoblastoma at just a few months old, the young family was thrown into a health crisis that would challenge not only their emotional strength but also cultural expectations and access to care. Today, Bisrat is fifteen and thriving. He is an example to many as a high school scholar, disability advocate and survivor. But the road to that outcome was anything but certain initially.
In a recent conversation with KnowTheGlow’s Co-Founder, Megan Webber, and Africa Program Manager, Ruth Ngaruiya, Ermias recounted the events that shaped their path. Ermias and his wife were first-time parents when his grandmother noticed something was off with the baby’s vision. Bisrat wasn’t tracking movement like other infants. A local health center reassured them, but their instincts led the family to keep seeking answers so they traveled to Menelik II Hospital in Addis Ababa for a second opinion. It was there that Bisrat’s examination revealed the diagnosis of a condition neither parent had heard of: bilateral retinoblastoma. At the time, the only treatment available in-country was the removal of both eyes.
The diagnosis was devastating and the situation grew more complex as they faced resistance from extended family members who urged them to seek traditional remedies instead. In a culture where spiritual interpretations of illness are common, some suggested holy water rather than surgery. Amid the emotional storm, Ermias and his wife made a critical decision not to let anything dictate their son’s fate. At the time, European treatment options were well beyond their reach. The parents decided to use the holy water and also look for medical treatment. However, they learned about treatment availability in Kenya and soon found themselves at Kenyatta National Hospital under the care of Dr. Kahaki Kimani.
Bisrat was just three months old when chemotherapy began. The treatment was grueling, and there were complications that required frequent blood transfusions. The young family stayed in the hospital with their son for over three months. After three rounds of chemotherapy, it became clear that Bisrat’s tumors were too advanced to save his vision and the goal shifted from preserving sight, to saving his life. Both of Bisrat’s eyes were enucleated and fortunately, tests confirmed the cancer was contained. Ermias expressed profound gratitude for their decision to seek treatment in Kenya, believing that Bisrat’s outcome would have been far different otherwise.
Now a teenager, Bisrat’s life defies expectations. He excels in school, reads and writes in Braille in both English and Amharic, and was awarded a scholarship to study German in Germany, a language he now speaks beautifully. His aspirations are equally ambitious: he hopes to study law and advocate for the rights of people with disabilities. At home, he plays football, practices music instruments, rides a bike with the help of a coded system developed with his father, and regularly beats his father at video games using his hearing and other senses.
Their story has become a powerful example of advocacy. Together, Ermias and Bisrat now work to raise awareness about retinoblastoma and challenge the stigma associated with childhood blindness in Ethiopia. Ermias concluded his PhD in special needs and inclusive education and volunteers with government schools to train teachers on methods that support visually impaired students. They regularly visit hospitals, often meeting families newly referred by Dr. Sadik Sherief, one of the country’s few pediatric ophthalmologists. Medical staff report that their outreach has helped many families choose treatment over traditional alternatives and stay the course.
Broader challenges remain severe in Ethiopia as awareness of the signs of pediatric blindness is extremely low. The early sign of The Glow is frequently misinterpreted as spiritual possession or bad luck. Families face logistical and financial barriers, with most treatment centralized in Addis Ababa. Many travel long distances, some selling land or homes to cover costs. Social stigma compounds the crisis, often leading to isolation or school exclusion for affected children.
Thankfully ,there are support systems developing however, like TAPCCO, a local civil society organization in Addis Ababa that provides temporary accommodation and meals to families from rural areas seeking treatment. At TAPCCO’s facility Ermias and Bisrat recently visited to share their experience and encourage others.
For Ermias, the goal is not just survival but visibility. “We never wanted to hide him. From the start, we told him he could do anything.” That belief has been grounded in action, advocacy, and resilience which has made Bisrat’s journey a symbol of what’s possible when families are empowered and communities are informed.
Their ongoing efforts aim not just to raise awareness, but to shift perceptions of disability and childhood cancer in Ethiopia. At KTG, we look forward to watching what awaits this extraordinary young man and continuing to share the impact he is sure to make on all those lucky enough to meet him. You can watch more of Ermias and Bisrat’s interviews and participation here:
Interview links: https://youtu.be/pdlC0obe2lk?si=prWQjelGug7pUtvU and https://youtu.be/yDuJq6ckFT8?si=JsKsooPvKzbs5ZS_