Leah Orr: A Mom with a Plan
Leah Orr became a devoted volunteer
when she learned she was pregnant with
a child who would have CF. Today, Ashley,
is a thriving 5-year-old, and continues to
benefit from treatments developed by the
When Leah Orr was 18 weeks pregnant, she learned she was carrying a child with cystic fibrosis. "I had no idea what that meant," says Leah. "But the very first thing I did was call the CF Foundation."
“A very helpful staff person put me in touch with Dr. Morton Schwartzman at the Joe Dimaggio Children's Hospital in Florida,” Leah says. “And he told me what I might expect regarding my child's health.”
Dr. Schwartzman also visited Leah at the hospital the day Ashley was born. "The first thing he said to me was ‘Listen, you're very lucky,'" Leah recalls. “’Your child is going to take the medicines that are now available to treat this disease, and she's going to grow up and do just great,'" Leah says. "And you know what? He was absolutely right. With a steady regimen of Pulmozyme and TOBI and regular visits to the CF care center, Ashley stays really healthy."
Great Strides, Great Books
Since that first phone call to the Foundation five years ago, Leah has been a devoted volunteer. "That was when I learned about Great Strides," she says, "and I wanted to do my part."
She started recruiting a team right away, and when the walk occurred a week after Ashley's birth, Leah participated with the tiny baby in her arms. Team Douglas Orr Plumbing/Ashley's Angels has been a winner ever since, raising more than $300,000 for the quest for a cure.
That amount includes the proceeds from a series of children's books Leah has been writing with her mother, professional artist Josephine Lepore. So far, they have written and illustrated two books — Kyle’s First Crush and Kyle’s First Playdate — featuring a little boy named Kyle who has a giant crush on a little girl named Ashley Elizabeth, who has CF. While her initial goal was to raise money for the Foundation, her biggest joy in writing the books, Leah says, is the letters she receives from children with CF.
Many say their favorite part is getting to see what Ashley looks like in the photograph at the end. Because of the risk of B. cepacia, Leah explains, they really don't get to meet other children with CF. "Some say they feel like they are the only person in the world who has this disease," she says. "When they read that Ashley Elizabeth’s poop smells really bad, they can relate and laugh about it."
“Wayne and I recognize how lucky we are that Ashley is such a healthy kid," says Leah, whose family also contributes to the Milestones to a Cure campaign.
Recently she heard Dr. Beall, president and CEO of the CF Foundation speak about the Foundation’s success with VX-770 and other treatments, and got really excited. “I decided then and there my mom and I would write more books, and promote them and have all these walks,” she says. “Our goal is to raise a million dollars in the next five years. I think we can do it!”
back to top