'Riley's Heart Machine' inspired by author's daughter
When Lori Jones' infant daughter, Riley, had a pacemaker implanted on her heart when she was about a year old, Jones worried that she would grow up self-conscious about her scars, her doctors' appointments and her medical history.
Riley became the inspiration for Jones' first children's book, “Riley's Heart Machine,” and Riley, 6, is getting used to talking about her condition at readings, interviews and book signings, Jones said.
“It actually helped her, because she felt like she could be proud of (her pacemaker),” said Jones, 43, of Pine. “She's told her story for Show-and-Tell; shown other kids her scar.”
Jones and Riley took their story to students in Holy Trinity Catholic School in McKees Rocks Wednesday, with a reading of the story and a discussion among the students.
Illustrated by St. Louis-based Julie Hammond, the book was released in September through Guardian Angel Publishing. Some proceeds go to the Lincolnshire, Ill.-based Children's Heart Foundation for research and outreach related to congenital heart defects, Jones said. She will take over as the foundation's Pennsylvania chapter president next year.
“As a parent it was funny, because you feel like you're the only one going through this,” she said. “Now that I'm part of the Children's Heart Foundation, I feel like I'm the lucky one because I found people waiting for heart transplants, or going through regular open-heart surgeries.”
Riley had her second pacemaker put in this summer in Children's Hospital in Lawrenceville, with a battery that should last about 10 years, Jones said.
“There are only a handful of books out there about children with congenital heart defects, despite it being the most common birth defect,” said Patty Cheshire, president and founding member of the heart foundation's Pennsylvania chapter. One of every 100 children born has some sort of heart defect, said Cheshire, 45, of Newtown Square outside of Philadelphia — including her son, Camden, now 8.
The Pennsylvania chapter sponsors several fundraisers a year, including the Congenital Heart Walk in North Park each June and the Remember an Angel/Swing for a Survivor golf tournament at the Butler Golf Club in August.
Nancy Baker, a representative of Medtronic, the company that supplied Riley's pacemaker, said it was a twist of fate that inspired her to bring Riley's story to the students at Holy Trinity, where her son is a student. Each year, the school focuses students on a particular trait or character value, and this year's was “courage,” she said.
“I've put in pacemakers; I know how traumatic that is, so I know that little girl's got to have a lot of courage,” Baker said.
Matthew Santoni is a staff writer for Trib Total Media. He can be reached at 412-380-5625 or firstname.lastname@example.org.