Friday, January 25, 2013

Lessons learned through pages turned


A gift of writing: Bryn and Thiele

When it came time for Bryn Seltzer, 13, of Needham, to choose her bat mitzvah project, she knew she wanted to give back to the Pediatric Epilepsy Program at MassGeneral Hospital for Children (MGHfC), which had cared for her since she was 6 years old.

“I’ve always really liked to write, and so for my bat mitzvah project I wanted to do something that helped kids with epilepsy,” says Bryn, who outgrew her condition and was able to stop taking medication last year.

She asked Elizabeth Thiele, MD, PhD, director of the Pediatric Epilepsy Program, for ideas on ways she could give back. Thiele suggested Bryn write a children’s book about being diagnosed with epilepsy, since there are so few books explaining the process. Along with the program’s social worker Leigh Horne-Mebel, LICSW, and nurse coordinator Tricia Bruno, RN, Thiele then worked with Bryn to outline a wide array of issues that many pediatric patients face.

Bryn wrote and illustrated Natalie’s Story, about a 7-year-old girl who learns she has epilepsy. While it is not an autobiography, Bryn says she incorporated some of her own experiences, including how nervous she was about telling friends about her diagnosis.

“I was kind of worried about sleepovers and how I would do at a friend’s house,” she says. “I remember telling my friend I had it, and she was really supportive. Everyone was really supportive. The book’s message is that, even if you have epilepsy, you can still do what everyone else does and still do what makes you happy.”

Bryn’s father printed 200 copies to donate to the Pediatric Epilepsy Program, and Thiele says this act of generosity will be a great resource for children in the program as well as an inspiration to other patients and families to become more involved in the epilepsy community.

“Families have really reacted well to the story and how it is written,” says Thiele. “They are very happy with how easy it is for their children to understand and know they are not alone.”

Read more articles from the 01/25/13 Hotline issue.

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