Mother publishes children’s story about learning to live with rare disease

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SHERIDAN ROY

STAFF WRITER

One local author and illustrator, Amy Magyar, hopes to spread awareness and to change the social stigma associated with living with a rare health condition through her children’s book, “Bobby B. Button and His Magic Button.”

Magyar’s story comes from the heart, as her son was diagnosed with a urea cycle disorder when he was just seven days old. Now 11, her son has never eaten by mouth and lives a life very different from other children.

The main character in Magyar’s book lives her son’s day-to-day challenges. Bobby B. Button has a magic stomach button that, when twirled three times, brings him on exciting adventures. Magyar hopes to shine a light on rare health conditions and special needs through her book.

“I hope that this book raises awareness to what others consider ‘non-traditional’ ways of life,” said Magyar. “I would like children to associate Bobby to other children in their lives who might not be ‘just like them,’ and let these ‘differences’ be learning experiences. Not all children are the same, but differences can be extraordinary and amazing.”

The author hopes to show other children living with rare health conditions or special needs that they are not alone. Immediately after publishing the book, she sent one of the first copies to a boy who was born with the same rare health condition as her son.

“After reading my book, the boy started twirling his stomach button and imagining that he was going on magical adventures,” said Magyar. “Upon hearing that, I knew that my first goal of the book had been accomplished. I made a boy with a rare health condition, who is fed in a non-traditional way, feel as if he is not alone.”

“Bobby B. Button and His Magic Button” is the first of what will be a series about Bobby’s adventures. In the first book, Bobby’s feeding button is introduced as a means of eating, and is briefly explained.

“I wanted the book to introduce children to different and/or rare health conditions, but really focus on how amazing Bobby is because of the way he eats, and that he can be just like any other kid, despite the way he eats,” said Magyar. “As the series progresses, I will touch upon why he has to have the button, and more about rare health conditions.”

The book has been recognized by such organizations as the National Urea Cycle Disorders Foundation and EURORDIS, an alliance representing 884 rare disease patient organizations in 72 countries. In addition, the Southington-Cheshire Community YMCAs purchased copies to distribute to their school-age child sites.

Magyar’s book can be found on Amazon by searching “Bobby B. Button.” It is fit for readers ages 6 to 10.

To comment on this story or to contact staff writer Sheridan Roy, email her at News@SouthingtonObserver.com.