An enduring miracle: Jays for Peds holds dedication service for toddler
Elliot Orion Shell was learning how to roar. Standing on a couch, the 16-month-old would often point at the animal stickers decorating the window of his hospital room, mimicking the sounds of the creatures he saw.
A lion. A monkey. A fish.
He loved stickers, his mom says. When visitors came, Elliot would peel off the COVID-19 screening stickers they were given at the front desk and slap them on his own belly.
He threw left-handed — his grandpa called him “Southpaw.” He loved music. He was fascinated by lights.
And he had a look, his parents remember, in his bright blue eyes full of heart and verve. A look that brought joy to those who met him and showed the world just how much love he had to give.
“People would always talk to me about how special he was, and he’s the only kid we had, so we really didn’t know any better,” says Elliot’s mom, Dana Freeman. “But I get it now. He had some quality, an energy that touched people’s lives.”
Elliot died on April 4, 2022, after living with a rare genetic immune system disorder called NEMO Deficiency Syndrome. A week later, Creighton’s Jays for Pediatrics student group held a small dedication ceremony in his memory.
Before he died, Elliot spent many mornings receiving occupational therapy treatment at Omaha’s Creighton Pediatric Therapy. There, under the care of Lisa Jordan, BSOT’96, an occupational therapist at the clinic and instructor in the School of Pharmacy and Health Professions, he learned to self-feed, eat and swallow, tasks that proved difficult for him throughout his life.
“Elliot was a beam of sunlight with those beautiful eyes,” Jordan says. “What a joy and gift it was for me to work with Elliot and his family. It truly made me a better human and clinician. It has been an honor and blessing to walk this journey with them.”
In March, Elliot was admitted to the C.L. Werner Cancer Hospital to receive a bone marrow transplant, which doctors hoped could help improve his immune function.
Jordan nominated Elliot for consideration for Jays for Peds, a student group in the School of Pharmacy and Health Professions that produces fun experiences or donates adaptive equipment to children receiving treatment at Creighton Pediatric Therapy.
Composed of on-campus and distance students in physical therapy, occupational therapy and pharmacy, Jays for Peds uses funds provided by the School of Pharmacy and Health Professions Student Government to host Make-a-Wish-like events, called Make-a-Miracle events, for nominated children each semester.
The Make-a-Miracle event, which has been around for about two years, has hosted car parades and painting parties. Once, they organized an at-home wildlife experience, arranging for different animals to be brought to the child’s home.
“Seeing the kids’ smiles on the days of their Make-a-Miracle events — they’re always excited to be the center of attention,” says Erin Miskell, an occupational therapy student and president of Jays for Peds. “Usually, the families are very grateful for the opportunity. Sometimes they have ideas in mind for what they think their kids would enjoy, sometimes we work together on them. We usually end up with some pretty great ideas.”
But 12 days after receiving his bone marrow transplant, Elliot contracted an infection. Just a few days before the scheduled light show, he died, surrounded by his family.
“I let (Jays for Peds) know when it happened, and I wasn’t sure what they wanted to do. I figured if they already had gifts, they could give them to someone else,” Freeman says. “But they decided to still give Elliot his miracle.”
After Elliot died, Jays for Peds donated several items in his memory to organizations throughout the Omaha area. Board books, baby swings and a lullaby sound machine to Children’s Hospital and Medical Center. A rocking chair to the pediatric intensive care unit at the University of Nebraska Medical Center. A memorial brick at Lauritzen Gardens.
In Elliot’s case, it was a light show.
At home with his parents, Elliot would be transfixed by the glowing geometric shapes of a glass chandelier and floor lamp, says his father, Stuart Shell. Toys also held wonder, and he would turn them over and over again, watching their movement.
Because of his condition, which made him susceptible to infection, Elliot’s hospital visitors were highly limited. So Miskell and his parents came up with a safe alternative: Jays for Peds would bring him toys to play with in his room, and in the street below his seventh-floor hospital room, they would produce a dazzling flashlight show that Elliot could watch from his window.
About a week after he died, Jays for Peds and Jordan held a small ceremony at Creighton Pediatric Therapy with Elliot’s family. They dedicated a bird bath, marked with Elliot’s name and released balloons in his memory.
“The clinic was a familiar place for Dana and Elliot, but not for me. It was always something those two did together. So it was nice for me to have a chance to see a place where Elliot spent a lot of his time,” Stuart says. “To be able to imagine him there, it was a comfort.”
For members of his extended family, some of whom had rarely been able to meet Elliot in person because of his condition, the ceremony provided one more precious opportunity to get to know him — and to grieve for him — together, Freeman says.
“That was such a gift to our family,” she says. “Especially since it came from all these people who had never met Elliot, but went to such great lengths to do all these things for him … In his life, and in his death, he touched so many people. And that really was the most meaningful part for us.”