By Bethany Hofstetter

Published: Wednesday, December 5, 2012, 9:00 p.m.
Updated: Thursday, December 6, 2012

Pine student Riley Jones is a spunky, energetic first-grader.

She takes tap, ballet and jazz classes and just started playing soccer.

Riley, 6, also was born with a congenital heart defect and only has the energy for her active lifestyle because of a pacemaker.

Doctors diagnosed Riley with third-degree atrioventricular block, or complete heart block, at birth. That means one side of her heart cannot effectively communicate with the other half, said Riley's mother, Lori Jones, of Pine Township.

Riley had a pacemaker implanted to regulate her steadily decreasing heart rate when she was 1.

She had to have another heart surgery to implant a new pacemaker in July, when the battery in the first one died.

“I have to stay away from big magnets, I can't go on monkey bars,” said Riley, 6, about living with a pacemaker. “But, it makes me have energy. I run and play.”

Riley's journey inspired her mother to publish a children's book, “Riley's Heart Machine,” as a tool for her daughter in anticipation of her entering school, but the story turned into an opportunity for readers to explore each other's differences.

“When she was about 2 years old, I thought ‘what if she becomes self-conscious of this or has to explain the bump on her belly to other kids,'” said Jones of her decision to write the book.

“It has created a conversation with children and parents about differences, disabilities and handicaps. It turned into that, I didn't expect that but it did.”

The book, almost biographically, follows the story of a little girl named Riley who was born with a congenital heart defect and now has a pacemaker. In the story, Riley nervously shares her secret during show and tell with her classmates who respond with questions and support.

Jones and Riley shared the story with Riley's class at Wexford Elementary School, and like the students in the book, they asked a lot of questions and shared what makes them different and special.

“It's been exciting,” Jones said of the experience of publishing the children's book. “I never predicted a little book about a pacemaker to catch on.”

“Riley's Heart Machine” has been part of Amazon's top 100 best sellers list of large print children's books since its release in September. The book sells for less than $10, and Jones is donating a portion of the book's proceeds to The Children's Heart Foundation, which funds research for congenital heart defects.

“It's very generous, and it's going to a much needed cause,” said Patty Cheshire, president of The Children's Heart Foundation Pennsylvania Chapter.

Congenital heart defects are the leading cause of all infant deaths and one in every 100 babies are born with a congenital heart defect in the United States, according to The Children's Heart Foundation website.

Cheshire, of Newtown Square outside of Philadelphia, said there are “only a handful of books” about children with congenital heart defects despite it being the number one birth defect in the United States, and “Riley's Heart Machine” is bringing awareness to the issue as well as raising money for research.

“The money we raise goes right to where we need it to go, Cheshire said. “We get by on donations, so it's an enormous help for someone to come along and say she wants to donate proceeds.”

For more information about “Riley's Heart Machine” and congenital heart defects, visit lorim jones.com or pennsylvania.childrensheartfoundation.org.

Bethany Hofstetter is a staff writer for Trib Total Media. She can be reached at 724-772-6364 or bhofstetter@tribweb.com.

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