“Hi! My name is Evren, and my mom and I have written this book for you…”
So begins Extraordinary! A Book for Children with Rare Diseases, written by 20-year-old college student Evren Ayik and his mother, Kara, who teaches writing at the University of California-Merced. Evren has a rare disease called acid sphingomyelinase deficiency, or ASMD, which can cause a range of symptoms due to a missing enzyme. Diagnosed at 3, Evren says he has experienced an enlarged liver and spleen, tight joints, vision problems, headaches and stomach problems.
Today, Evren is in his second year at California State University, Fresno, where he’s on track to become a special education teacher with a major in liberal studies.
“I want to continue to do my best at college, to complete that and continue on to my career and just try to live my very best life,” he said.
The mother-son team says they wrote the book for all kids who live with rare diseases to help them understand their unique identities and feel less alone in the world. Here’s what they said about Extraordinary!
Vita: Whose idea was it to write a book?
Evren: Well, I've always wanted to write a book. But after I graduated high school, my mom suggested that we could write a book as a way of honoring my big achievement of graduating high school. For someone like me, it’s a great milestone to come that far and get that achievement. So it was kind of both of our ideas, honestly.
Vita: How long did it take?
Evren: It took about a year.
Kara: It's kind of a two-part question, because the book is really a summary of all the lessons that took us years to learn. Evren was diagnosed when he was 3, so from 3 to 18, that’s 15 years of learning that it took to actually create the book.
Vita: So what has been the best part of working on the book?
Evren: It’s pretty cool becoming a published author and being able to tell your friends and family, to be able to say you have your own book, to get to share your book.
Kara: I think for me, there are two best parts. The first best part was I was truly so bursting with gratitude for Evren's life, that this physical manifestation of my gratitude was good for me. It was all of a sudden in tangible form. But the other really exciting thing for me was a bit of a surprise. I admit, I had wanted to hear from children, like little kids saying, “I like your book.” But I ended up hearing the most from adults who have rare diseases, from completely different rare disease groups, saying, this matched my experience in life. This is it. So for me, that was tremendously gratifying.
Vita: How did you come to work with illustrator Ian Dale?
Kara: I searched for a long time for just the exact right person to illustrate the book. Because it’s a children’s book, the illustrations are as key as the text, so it had to be just the right person. When we found him, we had to wait until he was available – it was about a year before the book could actually start emerging.
Vita: Evren, what was it like to see yourself illustrated?
Evren: It was really cool. I’ve never really gotten even like a caricature done at the fair or a carnival or anything like that. So when Ian was working on our sketches, he would send them over and I would just be amazed. I honestly thought he did an incredible job of portraying who I was and how I actually look. It was really cool to see that all come together.
Vita: So is anyone else real in the book besides Evren?
Kara: There is. There’s a little boy who's got red hair who’s seated next to Evren, on a laptop. He’s one of Evren's friends who also has ASMD. There’s also a cat, Pearl, who is seated on the lap of a little girl who's getting enzyme replacement therapy. And some of the dog illustrations are representative of our golden retriever, Valentine, who was still alive when the book was initially born and being created. That was quite intentional on my part, because I believe in pets as a way to help mental health for children. I know for some, pets can generate burden and expense, but the payoff that they give children is enormous. So it was important to me to have some animals in the book.
Vita: Were there any challenges or setbacks during the process of writing the book?
Even: It was challenging for me knowing that once you release the book, your story about your life is kind of out there. When we got to the end, I got kind of nervous and worried about who all would see it — that my life would be exposed to the world once the book was out. But I decided to just let go and be me, and let everybody know who I am, to share my story in order to help others and children in the rare disease community.
Vita: What do you hope this book will accomplish?
Evren: I really just hope it spreads awareness for people with rare diseases. And most of all, I hope it gives children with rare diseases a guide of what I went through, so they may have it a little bit easier - guide book to go off of. And it’s for parents, too – it's designed so parents can modify it for different children and use it to help give their children a better understanding.
Kara: My big dream is to continue working towards more translations. I believe that's important because when we’re discussing emotional things, especially for a child, you don't want that extra cognitive processing to interrupt the connection. So I'm really hoping to find my way towards more translations. So far, we only have German, but I'd love to work on Turkish and Spanish. Really, any would be wonderful.
