On the outside, 12-year-old Luna seems like your average kid. She loves to draw and read, and her favorite subjects are science and social studies. It’s not until you get to know her that you learn that Luna is anything but average.
Luna was born with a heart defect called dextrocardia and a single ventricle, or, as Luna puts it, “half a heart on the opposite side of your chest.” She has undergone three open-heart surgeries and continues to pursue her interests in art and fashion. But when Luna was approached by athletic shoe company Saucony to design a shoe for sale across the country, it came as quite a surprise.
“This is so amazing, I got to use my art and creativity for something new that I’d never thought I’d be able to design,” Luna said in an interview with shoe brand Saucony.
Luna is one of six patients from Boston Children’s Hospital who have partnered with Saucony to design their own shoe to launch the Shoes with Soul campaign.
“Rather than just a donation, we wanted to create an experience and a moment that would not only raise money, but also awareness to highlight all the amazing work that’s being done at BCH,” says Chris Mahoney, Saucony’s vice president of design. “Specifically, we wanted to give some of the BCH kids an opportunity to share their story and their talents with the world.”
Luna has long been stitching her own patterns on jeans and jackets, so when people around the world lace up their “Lunas,” they’ll be wearing her hand-crafted design.
“On the tongue, they digitalized one of my drawings, and then on bottom it’s a really bright pink color, and on the inside, the sole of the shoe is actually another drawing I did of a sunset,” she said. “Thinking about kids everywhere around the world wearing my shoe is amazing. It blows my mind.”
The proceeds from the shoe sales will benefit the Boston Children’s Hospital Cardiac Fitness Program, which encourages kids to “find your possible” through personalized exercise programs tailored for each individual patient’s heart condition.
“We enroll patients with congenital heart conditions into an exercise program where they train not only their bodies, but their minds to become fully fit and feel strong and capable,” says Dr. Naomi Gauthier, pediatric cardiologist and director of the Cardiac Fitness Program. “We start with a commitment letter for our patients, inviting them onto our team. They get team bags and gear, and then we watch in awe as they blossom physically and in every other way possible.”
But the Shoes With Soul campaign is about more than heart disease. Kids with different medical conditions were given the chance to share their own story through some fancy footwear.
Eddie, now 14, developed a limp at the age of 12 and was ultimately diagnosed with cancer. Today, people worldwide will be sporting the “Eddie” sneaker, which is bright orange and reflects his love for basketball. Now he has his own shoe deal, just like his favorite superstar, the Boston Celtics’ Jayson Tatum.
“I’m just a kid who dreamed of designing a shoe,” says Eddie. “It was one of the best moments of my life.”
Ten-year-old Jordynn’s shoe design features a unicorn. It’s magical and one-of-a-kind, just like her. She has a rare genetic condition know as Greig cephalopolysyndactyly syndrome, which has led to a lifetime of surgeries — 35 of them, to be exact.
“Unicorns are unique and I’m unique, too, because of my rare disease,” says Jordynn. “I’m proud to be unique.”
According to the American Academy of Pediatrics, there are 10 to 20 million kids and teens in the United States living with a chronic medical condition or a disability. Many of them must limit their activities, miss classes or events, and just feel different from their healthy peers.
“Patients with congenital heart defects do not have to sit on the sidelines,” said Gauthier. “The nagging thought of ‘I can’t’ still follows them, as parents, teachers, coaches and even health care professionals send the message of what they cannot do without balancing that with all of the things they can do.”
“I believe that the words ‘I can’ have the power to transform,” Gauthier added.
With the help of the Boston Children’s Hospital Cardiac Fitness Program, kids with heart disease get to experience that transformation.
“It feels really good to help people and it’s really something I can relate to,” says Luna. “The advice I would give a kid or someone like me is never give up … There are a lot of kids out there with your condition and you’re not alone.”
Dr. Dave Harrison is a pediatric cardiology fellow at Boston Children’s Hospital and researcher in transition of care between pediatric and adult healthcare systems.