Ethan's Story

Jeff, Gerald and Steve literally never leave Ethan Sappington alone.

They’ve also been attached to old-school movie characters and to superheroes.

Ethan goes along for the ride. Or the walk, anyway, with Jeff, Gerald and Steve.

Sometimes, that walk is laborious, like when Ethan is climbing steps at RUSH Kids Pediatric Therapy. Sometimes, it’s quick and thrilling, like when Peach, the Sappington family’s American pocket bully, pulls Ethan and crew around the block in suburban Chicago.

Ethan, now 13, has been a quadruple amputee since he was stricken with sepsis at 2. Living with residual limb loss is all he really knows, so he has developed coping mechanisms through the years.

Like naming his stumps: Jeff is Ethan’s left leg; Gerald, the right; Steve, his left arm.

It gives more meaning to what makes Ethan unique. Ethan embraces that uniqueness.

When asked why, he answers without hesitation.

“Because I’m awesome.”

‘Your son is dying’

It was beyond a parents’ worst nightmare.

That something so mundane, something so everyday could alter a family’s life forever.

It was the end of a two-day getaway to Lake Geneva, Wis., during the 2014 Labor Day weekend. The Sappingtons – mom, Theresa; dad, Cole; oldest daughter, Maia; and Ethan – were there with Cole’s brother and his family.

They were night-swimming in the resort’s pool when Ethan – the rambunctious toddler the family lovingly called Wreck-It Ralph – mimicked Maia and cannonballed into the water. He caught his elbow on a cracked pool tile, causing a nick no bigger than a paper cut.

He started bleeding but never cried. When Theresa turned away to retrieve a first-aid kit, Wreck-It Ethan beelined to the hot tub before his mother, who was 24 weeks pregnant at the time, could stop him. She scooped him out of the tub, cleaned the cut and put a Band-Aid on Ethan’s elbow.

“That was it. That was literally the end of the night,” Theresa said. “They played a little bit more and then we went up to the room.”

The next morning the family traveled home to Saint Charles, Ill., and Ethan wasn’t quite himself. He was unusually quiet and wouldn’t eat breakfast, even though there were pancakes, his favorite. He slept in his own bed that night; when his mom woke him in the morning, he was lethargic. Theresa called the pediatrician and, as she was waiting on the phone, Ethan threw up in her hands.

She immediately took him to the pediatrician, who sent Ethan to the hospital across the street for X-rays on his elbow. The pediatric unit wasn’t open yet, so the family waited a couple hours. Eventually, Ethan, who had a fever of 103.4, was examined and diagnosed with the flu – it was back-to-school season and viruses were swirling – and was given an IV bag. His elbow was never examined.

Ethan’s body began to swell, and Theresa demanded to see another doctor. Once re-examined, the staff flew into action. The little boy’s organs were in shutdown mode. He had been cannonballing in a pool 40 hours earlier and now, stunningly, he had a 5% chance to live.

A bacterial infection, likely originating at the elbow cut, had caused sepsis, an adverse and dangerous reaction that triggers inflammation, organ dysfunction and, potentially, death. Theresa stepped out of the room for a moment, and a nurse quickly came after her. 

“Your son is dying,” the nurse said. “I really need you in the room. We're having a hard time, and he needs to feel your presence.

”Within a minute of her re-entering, Ethan stopped breathing. 

Theresa, a mother of two with another baby on the way, heard the long, terrifying flatline beep of her 2-year-old son’s heart coding.

And she fainted.

Promising to make it OK

When Theresa regained consciousness on the hospital room floor, she realized she was having premature labor contractions – four months earlier than anticipated.

“I didn't care about anything but Ethan in that moment,” she said. “I didn't care if I delivered. I didn't care what was happening with me.”

The doctor instructed a trauma nurse to use defibrillator pads to shock Ethan’s tiny chest. After what seemed like forever – in reality, it was 16 seconds of breathlessness – Theresa said she heard, “dee, dee, dee, dee, dee. And his heart was back up.”

The doctor then turned to Theresa and spoke calmly and directly.

“It's my job now to keep (Ethan) alive, and it's your job to keep that one alive,” the doctor said, pointing to Theresa’s stomach.

Nurses helped Theresa into a chair next to Ethan. She was treated by emergency personnel while others attended to Ethan. Prescribed bedrest, Theresa stayed in the same hospital room as Ethan for two months, occasionally going home on weekends to be with her daughter and husband.

Nearly every night the number of friends and family that entered that room tested the hospital’s visitation limit. After eight weeks, Ethan was moved to a rehabilitation center; his mom followed. She stayed there until giving birth to her second son, Jaxson. Incredibly, Theresa carried Jaxson full term.

During Ethan’s struggle to live, Theresa became convinced the family could handle anything thanks to the love and support of others. Survive that first ordeal and anything is possible.

“I made a promise that no matter what happened to Ethan, I would do everything in my power to make sure that he was going to be OK,” Theresa said. “Then, whatever came our way after that, we would face it head on. And that's what we have been doing.”

Nineteen surgeries later

To save his life after the sepsis coursed through his body, surgeons amputated both of Ethan’s legs from the knee down and his arms at the wrists. It was the start of a decade-long ordeal that included continual trips to see surgeons and specialists.

There have been complications with bone growth that needed to be rectified as he’s gotten older as well as reconstructive surgeries to improve his quality of life. That has included manipulating bones in his hand to create finger-like pinchers the family calls “nubbies” on his right residual limb that allow Ethan to hold things, draw and paint.

Ethan who turns 14 in July, has had 19 surgeries since 2014 – more than 1.5 per year. His last was in January 2025 – meaning for the first time since the accident, Ethan’s family didn’t meet their insurance deductible in the first month of a new year.

“For a while, he was scared every time a surgery approached. He said his legs hurt because he knew surgery was in the future,” Theresa said. “But now, if he has to have surgery, he’s OK. I was telling him they injected him all those years ago with superhero serum. … Because this child comes home from these major surgeries and only takes Tylenol.”

Ethan has seen pictures of himself before the accident, but he doesn’t have any recollection of having limbs. At a young age, he was self-conscious about his appearance as an amputee, so he hid behind another, powerful identity.

“They called him ‘Spidey’ until he was about 7 years old, because he wore a Spiderman costume to hide his body parts,” Theresa said. “Every single day.”

He wore the costume over his clothes to school. Wore it everywhere. Even as he outgrew it, Ethan didn’t want to take it off. The costume’s sides split, its knees blew out. Ethan’s grandmother kept sewing it back together. It eventually was retired, but Theresa still has it.

Costumes, in general, became one of many obsessions for Ethan, who was also diagnosed with level 1 autism when he was an elementary schooler. Over the years, he somehow has collected 150 costumes. Some were bought at thrift shops or yard sales. Some given to him.

“I still do wear them sometimes,” he said, proudly.

Now, though, it’s Jeff and Gerald that get gussied up daily. Currently, the residual limbs are attached to prosthetic legs that feature original Star Wars characters. It’s a way to celebrate Ethan’s interests and individuality while no longer pretending to be someone else.

Theresa will never forget the first time Ethan made the leap out of his costume and into regular clothes in front of strangers. It was his first time at Camp No Limits, a nonprofit that provides recreational and camping activities for children and families who have experienced limb loss. Suddenly, his body wasn’t different than those around him. 

“I sat with my mom and just cried, because it was the first time that he had willingly taken his costume off to show himself to the other, limb-different kiddos that attended,” Theresa said. “That’s when we knew we were forever changed.”

‘I truly love my job’

Deanna Bailey had been a physical therapist at RUSH Kids Pediatric Therapy in Chicago for a year before she met Ethan in January 2022. She had worked with adult, limb-loss patients previously, but never with a child with residual limbs.

“He's always just kept a really positive attitude, which I think is really important and something that's so unique about him,” Deanna said. “He's been through a lot and has just always maintained such a positive attitude.”

Deanna’s plan with Ethan is simple: Assist him in gaining as much independence as possible during their three sessions per week. That goal hasn’t been linear in the last five years.

Ethan has undergone multiple surgeries during their time together, so Deanna’s approach is fluid. Sometimes, she works on improving comfortability and mobility with his prosthetics. Sometimes, it’s rebuilding strength in his limbs after a post-surgery layoff. She’ll get him to climb stairs or balance on a beam. A lot of times, they play games to improve dexterity.

“When I first started working with him, he wanted to play games, a card game or something, and I wasn't sure, especially with him not having a left hand. I didn't know if he could. I didn't know what that would look like,” Deanna said. “He just has this ability to adapt. He's so resilient with everything. He'll figure out a way if he wants to do it, which is really cool to see.”

Using his “nubbies,” Ethan loves to create interlocking block structures such as ships, towers and buildings. He also builds soldiers and alien figurines and paints each one with assistance from a sticky-tack tool that his grandfather made for Ethan.

Because of his autism, however, Ethan can be particularly sensitive to touch and to texture. It can make fitting him with prosthetics challenging. There was a point when he was younger that almost no one could touch his limbs – or his “burritos,” as he calls them.

But Deanna doesn’t typically have that problem when she provides manual therapy, which she does during most sessions. She had to experiment with finding a lotion Ethan tolerates, but she can massage his limbs with little pushback.

It's part of their bond. Ethan trusts Deanna. He loves telling her about his experiences and his passions, including the family’s frequent trips to theme parks in Florida. Ethan spent much of one such trip attempting to find the perfect character pin to bring home as a souvenir for Deanna. He nailed it, she said.

“That’s just how thoughtful and sweet he is. Even as a 13-year-old boy. He's just so special,” she said. “The family’s amazing. They’ve taken a really difficult situation and made the absolute best of it.”
And that attitude pays off in ways they may not realize.

“Getting to work with kids like Ethan and families like the Sappingtons, it really has reiterated that this is the right fit for me,” Deanna said. “I don't think everyone gets to say this, but I truly love my job.”

A sense of normalcy

Despite the upbeat attitude, the challenges are constant and there are times when the Sappingtons encounter hefty obstacles. Gym class is one. While in elementary school, Ethan, often in a wheelchair, participated in PE games such as badminton, pickleball and kickball. That changed once he moved up a level.

Partway into this school year, he informed his parents he had been relegated to scorekeeper during middle-school gym class. He also wasn’t allowed to climb up the bleachers – decisions presumably made in the name of safety.

“I only got to do the scoreboard. With my (power wheelchair) I could have (played),” he said. “They said I couldn't go on top of the bleachers. That embarrassed me in front of my friends.”

Ultimately, the family decided Ethan would spend half days at school and the other half at home. They didn’t want him to feel like there were things he couldn’t do. Not at 13.

“It was so infuriating, because I saw how hurt he was. The kid has gone through all these surgeries and to be somewhere where you're supposed to be safe and comfortable and he wasn't able to be included, that was killing him,” Theresa said.

Instead, he plays games in physical therapy, walks his dog and interacts with his siblings. His older sister is his best friend and his younger brothers, well, they are younger brothers.

“My brothers can be annoying,” Ethan says.

“That’s what brothers are for,” Theresa laughed.

“Yeah,” Ethan shrugged.

It’s that sense of normalcy that the Sappington family and RUSH Kids therapists have attempted to provide for Ethan.

Theresa is his full-time caregiver. She’s also become a speaker, advocating for parents to speak up for their children during heath crises and to ask for sepsis checks when they believe something isn’t right.

She’s had health challenges of her own. Her other children have dealt with developmental and/or physical issues. But Theresa and Cole have been able to make all of it work. Thanks to friends and family – and clinicians who have become family.

The village has shown up for the Sappingtons. Because, well, they are awesome.

“As challenging as it is and as it was, and as much as we face a new challenge every day, someone out there always has it harder,” Theresa said. “And we’ve gained a community. We've gained family. We've gained opportunities and experiences.

“Yeah,” Theresa paused. “We've gained a lot.”