StemCell Therapy

My vision

Author Ben Shaberman talks to OT about how families affected by blindness helped to inspire his new novel, Retina Boy

24 Jan 2020 by Ben Shaberman

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, cant 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

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.

Ben Shaberman

Original post:
It was important to me to make an everyday kid a hero - AOP

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