The first weeks of parenthood were terrifying for Paul Wilson. Not because of the usual insecurities about how to deal with an infant’s late-night crying jags, diaper dilemmas, or a minor bump on the head. Wilson and his wife, Amy, were uncertain whether their newborn son, Luke, would survive.
In 2008, Luke was born with spina bifida, a congenital condition of the spinal cord which can leave a portion of the spine exposed. The birth defect was a surprise to everyone, including the doctors, since it was not detected during prenatal ultrasounds, Wilson says.
“It’s our first child, and you’re expecting it to be a wonderful experience—and it was tragic right away,” Wilson recalls. “We needed almost as much help as [Luke] did to get through it.”
Luke was rushed from a regional hospital to Wolfson Children’s Hospital, the only children’s hospital in the Jacksonville, Fla., area. At just three days old, he underwent spinal surgery and had to be treated for fluid developing around his brain. After three weeks in the hospital, Luke went home, and now six years later, he’s thriving and living a normal life.
Countless other families don’t have such a happy ending, though. Those families are the ones Wilson thought about after he and his wife brought Luke home. He’d known families whose kids had been severely impaired or died from their related illnesses. Wilson says he felt obliged to find a way to help these families and show his appreciation for the life-saving interventions that his son received at Wolfson.
“I just thought, you know, we are all here for a greater purpose, and this is mine,” Wilson says.
When he learned that the hospital was turning 55 years old, his wheels began to turn. He figured he could leverage the avid local running community — of which he is a part — by developing a charity run. With the help of the Wolfson hospital’s foundation, he launched the Wolfson Children’s Challenge, which includes 55-mile and 55-kilometer runs and relay events. The event also pays tribute to 55 children who have been helped by Wolfson.
“Some kids are terminal and some are going to have issues for the rest of their lives, and this is a day to forget about all that,” Wilson says. “We’re honoring them in a positive light — it’s a celebration. It’s great for healing these families.”
The Challenge has grown dramatically since it started in 2009. The next run, to be held Jan. 31, 2015, is expected to draw more than 3,000 participants, Wilson says. That’s a group so large that the host venue for the event is being moved to Everbank Field, home of the NFL’s Jacksonville Jaguars.
“I never imagined this event would turn into what it has become,” Wilson says. And that includes its phenomenal level of fundraising. In five years, the Challenge has brought in more than $2 million through corporate sponsorships, community funding, and annual telethons. Wilson spends 15 hours a week through the year securing corporate donations and spreading the word about the event to local media and running groups.
The proceeds have paid for a $1.2 million 3 Tesla MRI machine, which uses groundbreaking technology to allow doctors to make earlier diagnoses of diseases and prevent some surgeries. Ten to 15 children—some with life-threatening illnesses—are helped with the MRI every day, says Joanna Blinn, Wolfson’s special gifts coordinator and staff liaison to the Wolfson Children’s Challenge committee. The next goal is to fund a next-generation medical camera that can give doctors a far better analysis of organ function than a CT scan.
“Paul’s vision for this event — it’s really quite incredible,” Blinn says. “The reach of this event is unlike anything I’ve seen.”
Since the Challenge began, some parents of sick children have been moved to join Wilson on the event’s board. Toby Lentz signed up to help organize the event after his 1-year-old daughter, Maddux, became one of the 55 children honored in the run. Maddux developed encephalitis, a viral infection that causes swelling of the brain, shortly after she was born. She was treated at Wolfson, but lives with permanent brain damage, Lentz says.
“We don’t know what her future looks like, but for now, she’s the happiest little girl in the world,” Lentz adds. Lentz helps with race logistics, such as setting up water stations, mile markers, and relay events.
“But I also love to get on my soap box and tell people how lucky we are to have a facility like Wolfson,” he says. “A lot of people where we live don’t know about Wolfson.”
Lentz has also turned to Wilson as a mentor of sorts, as Wilson understands the struggle and keeps him focused on thinking positively.
“It’s hard for me to focus on the present, and Paul does a really good job of reinforcing that,” Lentz says. “We can’t predict anything; you just have to be thinking about the days you have. And he reminds us how lucky we are to have our daughter today.
“He’s a role model, an inspiration. He’s why my wife and I really got committed to the Wolfson Children’s Challenge.”
Wilson says he just wants to show other families struggling to stay strong through a child’s illness that there is a light at the end of the tunnel. He hopes every child turns out like his own son, who is now 6 years old and the star of his school’s swim team.
“He got the award for the most improved 6-and-under swimmer,” Wilson boasts. “He is absolutely amazing. They call him the mayor at his school because he’s really outgoing.
“This is why I stayed strong and why all of these families should stay strong. They could have this for their children one day.”