I have been with the Foundation Fighting Blindness in the US for about 15 years. My role is to report on research for retinal diseases, such as retinitis pigmentosa, Stargardt disease and age-related macular degeneration. I write articles, give talks and work with families and people who are affected by these diseases. While my role is to give hope to those who are affected, I have always been inspired by the families, especially the young kids, who are born with these conditions.
These children who are born with virtually no vision are often happy, successful, productive kids. Even though my organisation and myself are supportive of identifying treatments and cures, I wanted to do something that honoured and made a hero of these kids who are born blind so I decided to write a book.
The plot starts out with a newborn baby who has very little retinal tissue. The researchers are mystified because they have never seen a condition like it. Early on in the story a classmate calls him “Retina Boy” and the name sticks.
I would say Retina Boy is somewhat of a superhero, but not in the classic sense of having amazing super powers. It was important to me to make an everyday kid a hero. His friend, Marcy, can’t walk so she uses a wheelchair. They make a perfect pair because she can be his eyes and he can be her legs.
“I have always been really inspired by the families, especially the young kids, who are born with these conditions”
I have had a good response from people of all ages and backgrounds. One thing that I tried to do is make each chapter a new adventure and a surprise. People seem to connect with that.
Because I have been with the foundation for so long, studying the science and interviewing families, I gathered a lot of background information that way. I also talked with a couple of developmental biologists about the idea of a child being born without retinas and how feasible that was. I decided to mention that Retina Boy has some retinal tissue because in developmental biology the retina is an early part of the eye structure.
People are asking, ‘When is the sequel coming out?’ I didn’t think about that when I was crafting the story but the final chapter does leave the door wide open.
Ben Shaberman is the senior director of scientific outreach and community engagement at the Foundation Fighting Blindness. His novel Retina Boy is published through Amazon and available as an audiobook on Audible. More details about the novel can be found online.
- As told to Selina Powell.