Girl with Rare Disease Wins National Award for Writing about the Book Wonder
A rare disease patient was the winner of the Library of Congress’ Letters About Literature award this year. She penned her note to R.J. Palacio; author of a book about a rare disease.
Claire Juip, a Friedreich’s ataxia patient, wrote Palacio to state her love of the book Wonder; a story about a boy named Auggie who lives with a rare craniofacial abnormality. In the book, Auggie enters school where he learns about how people view and judge him based on his appearance.
The letter mentions that she has read Wonder 3 times. First, as a curious reader in grade 3, and then again in grade 5 after learning her brother had a Friedreich’s ataxia. She read it a third time and final time after learning that she was also a Friedreich’s ataxia patient. Claire explains in her letter that each of the 3 times that she read the book, she was able to find 3 completely different meanings based on her state of mind at the time.
Claire’s letter is available at www.read.gov and it can be read below.
Dear R. J. Palacio,
I have read your book Wonder many times, and with each of those times my perspective changed. The first time, I liked it. The second time, I liked it much more because my world changed. The third time, Wonder became my favorite book because my world changed forever.
My mom bought Wonder because it was on my brother Jake’s 5th-grade summer reading list. I was in the 3rd-grade the first time I read Wonder, and I read it to challenge myself. I liked your book because it reminded me to be nice to other people, but it didn’t make a huge impact on me personally. When I finished it, I never thought that it would change my view of the world. I thought that if I ever went to school with people like Auggie, I would hope that I would give them a chance, but to be honest, I probably wouldn’t. I would probably be like Charlotte who is nice and says hi to Auggie, but doesn’t hang out with him. She’s a goody two-shoes, so she is kind, but they aren’t really friends. I put the book back on my bookshelf and was happy that I read a 5th-grade book, but I didn’t think more about it.
Remember how I told you that my world changed? After I read your book the first time, my older brother Jake was diagnosed with a rare chromosomal disorder called Friedreich Ataxia (FA).
FA makes your nerve cells die so you can’t walk and eventually you need a wheelchair. Because I love to read, I was looking for a book where the characters felt how I felt, so I re-read Wonder because now Via was like me. She also had a brother with a rare chromosomal disorder. Because all the attention was on Auggie, Via learned how to do things on her own. Sometimes my mom and dad had all of their attention on Jake because they were taking him to doctors’ appointments, so I had to do things on my own like my homework and piano. Via defended Auggie because she saw him as the funny, kind, thoughtful, smart person that he was on the inside instead of as the deformed person that he was on the outside. When Jake eventually needs a wheelchair, I knew that I would defend him also, but honestly I felt glad that I wasn’t him. I told Jake that the book was really good and that he should read it. I hoped if he read about how Auggie stayed positive, it would help Jake stay positive. I liked your book even more.
Then, my world changed even more. Last month, I was diagnosed with FA. When I learned that I had FA, one of the first things that shot into my mind was your book Wonder. Before I was diagnosed with FA, I imagined that Jake was Auggie and that I was Via. After my diagnosis, when I read the book a third time, I became Auggie, and my brothers and sisters became Via. That also reminded me of Via’s chapter, A Tour of the Galaxy, where Auggie was the sun and his mom, dad, sister and other relatives were the planets orbiting around him. When I first read that chapter, I understood how Via felt but I didn’t understand how Auggie felt. Now that I have been diagnosed with FA, I understand. I feel really sad because now I am like Auggie. Because he looks different, he is nervous to go to school. Right now, nobody knows that I have FA and I feel nervous like Auggie because I am worried that once people find out they will treat me differently. I like having friends. I want people to be nice to me like Jack, Summer, and Miranda are nice to Auggie. I want my friends to always be there for me even when my FA symptoms get more noticeable, but I’m scared that they will tease me like Julian teased Auggie. I understand why Auggie wanted to be ordinary, because I remember what it was like to be ordinary before I was diagnosed with FA. I can understand what Auggie felt like in his sadness and in his anger. Now that I can see myself how Auggie sees himself, your book means more to me than ever.
I would like to thank you, R. J. Palacio, for writing this book. It has helped me in different ways each time I read it. Auggie taught me that it was okay to feel the way I was feeling, and that helped me go through my life in a positive way when I found out I had a chromosomal disorder like Auggie. Before that, Wonder helped me understand what a person with a chromosomal disorder, like my brother Jake at that time, would be going through and how I could help them like Jack helped Auggie. The first time I read Wonder, I learned the value of being nice to people even if they have a disorder because they are a person, too. I really hope that everyone in the world will read your book because someday when I am different than I am now, I want people to be nice to me, and I think your book teaches people that.
In addition to being a wonderful writer, Claire is an excellent teacher. Below are two videos from her and her brother, Jake, explaining the pathophysiology, genetics, and diagnosis of Friedreich’s ataxia.