Near a gold framed quote that reads "be fearless in the pursuit of what sets your soul on fire,” 13-year-old Grace Luotonen sits at her desk to sketch.

Surrounded by her own art, including white sneakers with hand painted red and blue hearts, the teen carefully cuts shapes from pink checkered paper displaying black waves. 

These scrap pieces didn’t come from a sketchpad but from a machine known as an electrocardiogram, or EKG, which records a person’s heart and its electrical signals.

Born with a complex and rare congenital heart disease, the Allenton, Mich. eighth grader is all too familiar with these test results, whose dipping and spiking dark lines helped her doctors determine the health of her own heart.

And for the last two years, Grace has transformed EKG paper into art creations, from lighthouses and ballerinas to angels and butterflies. Her drawings are sold as notecards to support the annual Save A Heart gala that raises money for congenital heart patients and research at University of Michigan Health C.S. Mott Children’s Hospital.

“My heart issues have taught me a lot,” Grace says. “It makes me feel good to know I’m making difference.”

Test result turns into a work of art

It all started with a gift from her Mott pediatric cardiologist, Nancy Cutler, M.D. 

Grace’s family has been seeing Cutler since Grace was prenatally diagnosed with a heart condition known as left ventricular outflow tract obstruction, which limits blood flow out of the left ventricle.  

At a follow up appointment after Grace’s open heart surgery in 2022, Cutler asked the then 11-year-old what she wanted to do when she grew up. The answer took her by surprise: a pediatric cardiologist.

“That just melted my heart to hear her say she wanted to do what I do so she could help other kids,” Cutler remembered.

So Cutler sent her home with a copy of her EKG, explaining what the test meant.

The young artist saw potential for her next project, snipping the EKG paper and turning it into the body of birds. Her mom sent the picture to Cutler.

“I was just blown away,” Cutler said. “Most kids would have put that paper in a drawer somewhere but not Grace. She turned it into art.

“You can just feel the creativity and passion in her designs.”

It gave Cutler an idea: what if they turned the drawings into notecards to be sold at the Save a Heart event. She asked Grace to make more. 

And the middle schooler’s inspirations kept flowing.

Lighthouses, which remind her of her grandma, appear next to the message “follow your heart.” There’s a giraffe with EKG spots, reading “stand tall.” Many cards feature butterflies, a symbol of growth because of “how much I’ve grown,” Grace says.

Every year, she also designs a special angel themed card dedicated to kids with congenital heart defects that passed away. One reads “the strongest hearts have the most scars.”

I was just blown away. Most kids would have put that paper in a drawer somewhere but not Grace. She turned it into art.” Nancy Cutler, M.D.

Prenatal diagnosis to a healthy teen life

Melissa Luotonen was 20 weeks pregnant when she learned her unborn baby had severe medical problems.

Grace had a condition called situs inversus totalis, meaning that all her organs inside her body are in a mirror image position. Her heart is in her right chest and a mirror image of a normal heart. Her liver is on the left side of her body rather than her right. 

Doctors also later discovered the baby had abnormal heart tissue obstructing blood flow from her left ventricle to her aorta as well as a hole between the upper chambers of her heart. 

Grace had her first open heart surgery at a different hospital before turning one. A decade later, she needed the second one, led by Mott pediatric heart surgeon Jennifer Romano, M.D., when the excess heart tissue grew back, again blocking blood flow. 

Her condition means lifelong care. But her doctors recently removed several restrictions, including jumping on a trampoline and her favorite new experience: riding roller coasters.

Melissa Luotonen and husband, Aaron, were able to take Grace, along with younger siblings Luke and Faith, on their first vacations to theme parks last summer. 

“I don’t know when I may need another heart surgery or what’s going to happen down the road, so this has taught me to live life to the fullest and not take anything for granted,” Grace said.

Her stamina has also improved, her family says, and she’s been able to participate in competitive cheer, gymnastics and track.

“Knowing your child is in good hands and having a team of doctors you know you can trust with your child’s life, I can’t tell you how much of a difference that’s made to our family,” Melissa Luotonen said.

Amazing Grace

Aside from her work with Save a Heart, Grace also raises money for art supplies to donate to the Mott art therapy program. Art therapy, she says, offered a much needed distraction during her own hospitalization. She also volunteered to help a local heart walk raising money for congenital heart research in Michigan through fundraising and as a speaker.

And she still dreams of a career following her cardiologist’s footsteps.

“Dr. Cutler has been such a big inspiration for me and has made such a difference in my life. I want to have the same impact on other kids someday,” she said. 

And there are many children to help. Grace is among one in 110 children born each year with congenital heart disease. 

“We nicknamed her ‘amazing Grace’ since she was a baby and she lives up to that name all the time,” Melissa Luotonen said.

“We’re so proud of how much she’s overcome and how she’s using her talents to help others. Even with all the challenges, she’s turned her experiences into positives. Not only is she expressing herself through art, but supporting causes like this is a reminder that there are so many other kids like her and she’s not alone in this journey.”

Learn more about how to support congenital heart research at Mott and the Save a Heart event.

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