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Interview with the Author: Taline Dorna
Author: Ivana Ristevski and Taline Dorna
Taline Dorna is an elementary school teacher, dedicated CRRAB member, and now a new author as well! Taline presented a draft of her book, The Extraordinary Eye at the 2020 Retinoblastoma Research Symposium and her dreams of publishing her work have since come to fruition. CRRAB co-lead Ivana interviewed Taline to find out more about her book and future plans.
Q: What inspired you to write this story?
Our lives changed when our youngest child was diagnosed with retinoblastoma at 5 months of age. I came home to my then 3 ½-year-old and 2-year-old and found myself for the first time at a loss for words. I didn’t know where to begin or how to explain what had happened to the newest edition to our family. I decided that if I put on my teacher hat, I would be able to figure out a way to speak to my kids on their level about their brother’s diagnosis. This resulted in the creation of my very first children’s storybook, The Extraordinary Eye.
Q: What is the story about?
The story is about a little boy (my youngest child) who loses his eye to a rare ocular cancer called retinoblastoma. The story walks the reader through the stages of discovering ‘the glow’, diagnosis, treatment, and recovery. It includes terminology like retinoblastoma, ophthalmologist, tumor, ocularist among others, with simple definitions to help children and people of all ages understand.
Q: Why was it important for you to share your story?
It was important for me to be able to share my story, to put out a hopeful message of awareness so that children would not feel stigmatized with their eye prosthesis. I also wanted to raise awareness about retinoblastoma with the broader community. As an educator, I feel strongly about the expression, ‘knowledge is power’ because it truly is. Understanding what retinoblastoma is and knowing what to look for can save a child’s life. Many families who haven’t directly been touched by retinoblastoma, purchased my storybook, and learned about something new. They now know that something as innocent as a white ‘cat’s eye’ glow in a photo of a child can be a sign of retinoblastoma known as leukocoria, as this was what lead to my child’s retinoblastoma diagnosis. Leukocoria is also an indication of a range of other serious intraocular disorders.
Q: Why did you choose to tell your story through a children’s book?
I chose to tell our story through a children’s book because I wanted to help children affected with retinoblastoma feel good about themselves by embracing confidence and spreading a message of inclusivity among others, as well as spreading much needed awareness. My storybook includes words with definitions to help young children with retinoblastoma understand what may have happened to them or to share their story with others in the form of an illustrated storybook that would be easy for people of all ages to understand. In my case, I searched high and low for storybooks similar to what I wrote and found that they were very few and far between. When my son was diagnosed, my other children were under the age of 4 and I needed to help them understand what was happening to their sibling. This lead to the epiphany of eventually writing a storybook to help facilitate this. Educators may also want to utilize this book as a tool to teach inclusiveness within their classrooms, or perhaps a student with retinoblastoma and/or a prosthesis may want to share their story with the class. This is where this book comes into play. The main character in the story is a boy with no name. The reason why I applied no names to the boy or any of the people in the story, is to make it relatable for every child reading my book.
Q: What do you hope readers take away from your book?
I hope to instill confidence within my readers no matter what differences they may have. What makes you different, makes you stronger, unique and extraordinary. I often tell my son that he’s extraordinary. When he asks me why and what that means, I explain that they took his ordinary eye and sprinkled it with a little bit of ‘extra’, making it extraordinary. I tell him, “There is nothing you can’t do that others can”. I sometimes use the example of an ice cream sundae. You can take a scoop of plain vanilla ice cream and put it in a bowl, but that’s just plain and ordinary. Now imagine taking that ordinary vanilla ice cream and adding some sprinkles, maybe some candy, chocolate sauce, whip cream and a cherry on top. We just made an ordinary bowl of vanilla ice cream, into an extraordinary ice cream sundae!
Q: How did the accomplishment of becoming a published author make you feel?
I felt conflicted at first. I didn’t want to put my son’s story out there for all to see, but I knew that writing and publishing this story would help others like my son, or others with unique differences feel good about themselves, while spreading retinoblastoma awareness. This is why I didn’t attach a name to the people in the book, making it relatable for all children, everywhere.
Q: What are your future plans regarding the book?
I want to spread the message about my book to as many retinoblastoma survivors, patients, families and friends in order to spread a message of hope while raising awareness and taking away the stigma behind having a prosthesis. I am also considering translating the storybook into other languages.
Q: Is there anything else you would like to share about your experience?
My husband and I are involved with CRRAB. My husband is part of the Priority 1: Early Diagnosis Working Group, and I’m a part of the Regional Working Group. We both endeavour and strive to make a difference and help support research efforts in retinoblastoma. My husband is a software developer and I’m an elementary teacher by profession, as a result we’re able to apply our skills and experience in something that can truly make a difference outside of the realm of our work.
Taline’s book, The Extraordinary Eye is available for purchase on Amazon. Click here for more information on the book and related merchandise, or to connect to Taline on social media. A portion of proceeds from sale of the book will be donated to retinoblastoma research.
