Bisrat’s Story – told by his father, Samson
Bisrat was born in Addis Ababa, Capital city of Ethiopia, on December 28, 2004. He is my third child.
When he was two months old, my wife said she saw something white in his right eye. I tried so many times to see what she described, but I couldn’t. I joked about what my wife told of this strange thing. I sometimes said it also might be a light reflection. But all was not true.
Suddenly, one day, I saw the glow for a moment, but I couldn’t see it again.
When Bisrat was 10 months old, I had a hospital appointment for myself; so I decided to bring Bisrat to a doctor for a check-up. He told us this problem could be simple or very dangerous and we must take Bisrat to a specialist hospital as soon as possible. He didn’t explain the problem clearly to us though. This check-up brought a mess to all our family. We really didn’t trust the doctor.
The next morning, we went to a bigger government eye hospital (Menilik). The doctor who checked Bisrat asked if I had connections abroad. My wife and other relatives became nervous, crying, running here and there… The question panicked us all.
I told the doctor I do have friends abroad, and asked her what was wrong with my son. She told me Bisrat had retinoblastoma – cancer in the eye, I had never heard this name in my life. She told me to inform my friends to help me to save his life and eye. Wow, this was so complicated.
I called my German friends and told them the story. They were sad, but told me treatment in Germany is very expensive and advised me to try it in Ethiopia.
I googled to understand about retinoblastoma. Terrible, I hid all that new knowledge from my wife.
While researching, I found the website of Daisy’s Eye Cancer Fund (now World Eye Cancer Hope) and sent an email requesting guidance for my family. Abby White and Prof. Brenda Gallie responded with more information and Prof. Gallie proposed she talk directly with Bisrat’s doctor. She was convinced that enucleation (removing the eye) was necessary due to the size of the cancer, and this could be done easily in Addis Ababa. However, Bisrat’s doctors were not prepared to treat him, telling us the eye might be saved abroad.
At this time, my German friends said they would try to help. I think they understand the aggressive nature of such eye cancer and the need for prompt treatment.
With great support of our doctor, Dr. Abonesh, we acquired the necessary papers in a very short time. My friends found sponsors in Germany and arranged all that was needed for our travel. Abby and Prof. Gallie referred us to the University Hospital Essen, Germany’s leading retinoblastoma centre. Everything was done in a very short time, thanks to God.
We flew to Germany on 04 December 2005. The next day, Bisrat was checked by the professors at Essen Eye Clinic. The result was so bad – they confirmed he had unilateral retinoblastoma, and told me his right eye must be enucleated (surgically removed) to save his life, just as Prof. Gallie had stated. Oh my God, it was very painful. How could I tell this to my wife and all our family? I sat and thought what to do. The doctors again told me to decide immediately. I had no choice other than saving my son’s life, and told them Ok, go ahead, with unclear feeling.
The next morning, I gave my son to the doctors and waited for the outcome. Horrible, walking here and there, until my son came back. After two hours, the doctors gave me my son, with one eye bandaged, I couldn’t stop crying, I didn’t know what he would look like when the dressing was removed.
I told my sister in-law the story to tell to my wife. This was so difficult for me. We stayed in the hospital for another three days; they put on a new bandage and told me to renew it every three days until the wound was healed.
The doctors told me what would be necessary for Bisrat’s future care, that we must wait until the eye was examined to tell us if the surgery had cured him. Then the tumour would be checked for genetics, another headache. They told me to find an ocularist (a person who makes prosthetics) so Bisrat could receive a painted artificial eye. My German friends arranged this too in Karlsruhe. I have no words to thank all who helped me to save Bisrat.
Thankfully, the pathology showed Bisrat was cancer free and needed no further treatment. After some days, we went to the ocularist. Making the artificial eye was very expensive, but so important he receive it, to keep his eye socket growing and for his spirit to be well. He looked good with the new eye; he didn’t know what happened to his real eye, just played on as any child plays. I was to happy to see this.
We returned to Germany in June 2006 for a regular exam, and were due for another exam before the end of the year. Prof. Gallie and Abby planned to be in Kenya in November 2006, on a fact-finding mission about the care of Africa’s children with eye cancer. Abby proposed we join them in Kenya where Prof. Gallie could perform Bisrat’s eye exam, rather than taking an expensive trip to Germany. So Bisrat and I travelled to Kisumu where he had a great eye exam. We were very happy to meet one another in person, and Bisrat enjoyed playing with other children who had eye cancer.
Since then, we have had yearly checks in Germany and a new artificial eye. Again my German friends have always been with me, from giving us welcome accommodation to arranging free care at Freiburg University Eye Clinic.
Bisrat is doing very well with one seeing eye, which remains cancer free and in great condition. He still struggles with the daily routine of cleaning his artificial eye, and this is still a difficult process for my relatives to help him with. Despite all he has been through, he is now a top student in grade four, a healthy, friendly, confident and relaxed boy.
I am now part of a growing group of doctors and parents exploring how we can replicate the Kenyan National Rb Strategy and bring to Ethiopia the improved awareness, medical care and family support our southern neighbours are achieving.