“She was the brightest light, she was strong, she was brave, she was beautiful”

By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

The first time Riley Children’s Health schoolteacher Lindsay DeWilde introduced herself to Payton Himo, the reaction was priceless.

“She screamed out of pure joy and said, ‘School! I love school!’

“I knew at that moment that we would become great friends,” DeWilde said.

That was in 2019, when Payton was in first grade, and DeWilde would go on to work with the little girl off and on for the next five years as Payton spent more and more time in the hospital struggling with a weak heart.

Born with hypoplastic right heart syndrome (often referred to as half a heart), tricuspid atresia and transposition of the great arteries, she was tiny in stature but big in personality, endearing her to everyone she met.

On Sept. 30, 2024, 12-year-old Payton passed away at Riley Hospital for Children, seven months into her most recent admission. She spent more time in the hospital than at home in the past few years, as her heart continued to fail, and other complications prevented her from being listed for transplant.

“I will miss walking past her room and hearing, ‘Hi, Miss Lindsay!’ no matter how yucky she felt that day,” DeWilde said. “She was such a special girl, and she brought joy to anyone who met her. I am so grateful that I was able to be part of her story, and I will remember her always.”

So many people were part of Payton’s story, and that’s because she drew people in wherever she went. Her joy, her laughter, her bravery and her irrepressible spirit are what those same people remember now, even as they struggle to imagine a world without her in it.

Kim Ziegler, child life specialist and Child Life Zone coordinator, has been at Riley for nearly eight years and first got to know Payton over the phone when the then-4-year-old would call in to Riley’s “Surprise Eggs” Friday game show on CCTV.

“I kept hearing this little voice who would call in all the time and say, ‘It’s Payton!’ Ziegler recalled. “But I didn’t get to put the face to the name for a while.”

Payton, who will go down in history as the “Surprise Eggs” and Bingo queen at Riley, loved games. She especially loved winning at games, as anyone who ever played with her can attest. But she always did it with a smile.

“Every time I went to her room, she was like, ‘Can you stay and play?’ She and her mom taught me multiple card games,” Ziegler said. “She was always playing a game or doing a craft.”

Or building complex LEGO creations, many of which were on display during her funeral service last week.

Ziegler has some of the crafts that Payton made for her in her office, including a “Brave” bracelet and a heart mobile with some of her drawings.

“She will always be close to my heart. Just a little ray of sunshine.”

The light that Payton brought to Riley, to her family and to all in her orbit was all the more stunning because of the dark times that she faced, enduring eight open-heart surgeries and too many tests and procedures to count.

“Riley did a phenomenal job trying to help her,” said Matilda Perez-Himo, Payton’s mom and fiercest advocate. “Dr. (Mark) Turrentine and Dr. (Robert) Darragh were hopeful to get her on the transplant list, but Payton never got the chance.”

More than anything, she wanted to be back home in Portage, Indiana, her mom said. She spent many holidays and birthdays in the hospital, most recently taking on the role of princess for a day while celebrating her 12^th birthday in May.

“She was truly a blessing,” Perez-Himo said of her only child. “She was the brightest light. She was strong, she was brave, she was beautiful, she was generous.”

Payton was showered with gifts over the years, but she loved to share those gifts with her friends on the Heart Center at Riley.

“For her birthday, she picked out gifts that were given to her and gave them to other patients,” her mom said. “I had a burst of happiness in my soul.”

The generosity of spirit that Payton exhibited was nurtured by her mom, who is beloved by the Heart Center team and others throughout the hospital.

“Payton and her mom will be missed so much,” said Julia Burgess, who cared for Payton as a nurse on the Heart Center for many years and was able to experience the solar eclipse with her in July. “They brought so much joy and fun to the Heart Center, even during COVID.”

Burgess described Payton as a “warrior,” but she said her little patient learned how to be strong from her mom.

“Matilda not only took care of Payton 24/7, she also cared for the nurses and other patients. She doesn’t even know the impact she’s leaving on all those families and the Heart Center,” Burgess said.

But the impact goes beyond those walls.

“From the red wagon people, to the greeting people, to the security guards, to the nurses, to the janitors, to the volunteers, there weren’t too many people who didn’t know us,” Perez-Himo said. “For years, I’ve been walking those halls. They were my family there.”

And like family, Perez-Himo shared her cooking and coffee and treats with everyone. She made a Puerto Rican-style chicken and rice dish and shared a meal with several of the adult heart patients who were on the unit last year. She made sure the nurses remembered to eat during their busy days, always offering a kind word and a smile, even on her hardest days.

“It gave me joy to be able to give to them,” Perez-Himo said. “They work so hard.”

She laughs when she remembers the time she and Payton made stuffed peppers with therapeutic recreation specialist Mary Myers for the heart team.

“The unit smelled for two days. But from the child life specialists to all the therapists and nurses, anything Payton wanted to do to have a piece of home, they helped,” she said.

Payton was the first patient Myers worked with off orientation when the therapist joined Riley in 2020, and it took only a second for the little girl to capture her heart, she said.

“She had a smile that would light up the room, the most expressive eyes I’ve ever seen, and a laugh … her laugh would get us going and bring so much joy to the situation,” Myers said. “Her heart was filled with love, and her trust and faith in God shined through her. She struggled every single day, but she never gave up.”

She didn’t give up on herself or on those around her, Burgess said, recalling how Payton understood her body well enough to know why she needed treatments that sometimes left her feeling bad.

“She was one of the bravest patients I’ve ever had, and she was a great role model … encouraging other patients.”

For Perez-Himo, life outside Riley and without her daughter by her side is hard to imagine, but she is determined that Payton’s story doesn’t end here.

“I’m probably always going to be sad,” she said. “But I know her life served a purpose. She fought all the way to the end. She’s my true hero.”

Maybe that purpose was sharing her love and light with other people along the way, Myers said.

“It’s almost like she knew … that God sent her to be a light in the world, and oh, did she shine!”

Payton is also survived by her father, Shawn Himo, her grandmothers and several extended family members.

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org