CHARLOTTE, N.C. — The pharmaceutical company Alexion created the children's book series “Inspired By” to help families with young children talk about rare diseases.
The latest book in the series is titled “A Day with Nurse Jen.” It's dedicated to young patients and families affected by atypical hemolytic uremic syndrome, or a-HUS. A-HUS is a genetic, chronic and rare disease that can progressively damage vital organs and often causing kidney failure.
The “Inspired By” series uses real patient stories to explain the rare conditions like a-HUS. Emma Porter, 10, was diagnosed with atypical hemolytic uremic syndrome three years ago after her mom, Colleen Porter, rushed her to the emergency room because she was turning yellow.
“Considering it's so rare, we had never heard of it,” said Colleen Porter. “We had no understanding of what life was going to look like for her. We were terrified because we did not know what the future was going to hold for her,” she added.
The real-life nurse is Jen Lamothe. She is a program coordinator of the Pediatric Nephrology Center of Excellence at Levine Children’s Hospital. She worked with Emma Porter and her family to put her story into the book.
“One of the best things about this book is it's a way for newly diagnosed kids to see that other people have done this and life is normal for them after and they can go on to be regular kids who are playing soccer and doing all of those regular things,” Colleen Porter said.
Anyone can request a free copy of the "Inspired By" books.