Outerbridge family shares story of son’s battle with rare disorder

The date was Nov. 25, 2024 – the last time Jennifer or Nick Outerbridge saw their oldest son awake and out of the confines of a hospital bed.

Thanksgiving, Christmas, New Year’s and Caleb’s 17th birthday have all come and gone, and the formerly vibrant, active Bradley-Bourbonnais Community High School junior has not fully regained consciousness since falling victim to a serious and rare autoimmune disease known as Acute Disseminated Encephalomyelitis, or ADEM.

Few words can describe the gravity of the past three months for the Bourbonnais mom and dad of four.

To say it has been harrowing barely skims the surface.

The couple could only label it a “nightmare.”

In an instant, Caleb had gone from an athletic, outgoing, creative, intelligent, sweet-natured boy to a motionless coma patient – a shell of his former self, who loved football, photography, solving Rubix cubes, playing with his younger siblings and starting side hustles, like selling bags of chips at school.

“It’s kind of like we’re grieving him, but he’s still here, and it’s a really hard thing,” Jennifer, stay-at-home mom, said. “Because no matter what, he won’t be the same, whether that’s the trauma of it, whether that’s physically and mentally. We might have a mentally-handicapped child for the rest of our lives, and we need to figure out how to make that work.”

“And [parent our] other kids and have a life and a home,” said Nick, a local waste collection worker.

Jennifer and Nick have been immersed in a constant battle to maintain faith for their son’s recovery while weighing the heavy reality of his uncertain future.

Each day, they traverse a flimsy tightrope walk between optimism and despair.

But, moments of hope have glistened through the darkness.

The day that everything changed

The Outerbridge home was preparing for Thanksgiving when Caleb went to bed feeling sick. They let the then-16-year old rest and checked on him several times before realizing something was wrong.

Dad turned the lights on and told Caleb to wake up; it was time to help Mom with the cooking and cleaning.

Caleb was unresponsive.

When paramedics arrived, they assumed Caleb suffered a drug overdose. Two doses of NARCAN had no effect.

At the hospital, he was immediately intubated to facilitate breathing. Doctors suspected meningitis, but Caleb tested negative.

A brain scan revealed what looked like white clouds, which signified inflammation and damage to the myelin sheath, the protective covering of nerve fibers in the brain and spinal cord.

Caleb was diagnosed with ADEM, a disease affecting fewer than one in 100,000 children per year.

The condition is thought to be triggered by an immune system response, often following a viral or bacterial infection.

Doctors could not tell the terrified parents what to expect. The symptoms and severity of ADEM vary, but recovery is possible.

More than three months later, Caleb remains in a coma, but he has shown subtle signs of responsiveness, such as opening his eyes and faintly moving his fingers when asked to squeeze his parents’ hands. He has been receiving care at Comer Children’s Hospital in Chicago, with a potential transfer to the city’s Shirley Ryan Rehabilitation Facility currently being considered by his doctors.

“I do believe he’ll make more progress,” Jennifer said. “We’re just hoping it’s enough to have a life.”

Mom and Dad staying strong

There have been good days and bad.

Despite doctors’ warnings that it wasn’t likely to happen, Caleb started to open his eyes.

He seemed to be making eye contact with his parents, and while doctors cautioned them that it was likely not meaningful or conscious eye movement, Jennifer and Nick have treasured these moments, capturing them on video to show family and friends.

“We still don’t know what is going to happen, but I knew that he wasn’t done fighting,” Jennifer said.

However, they still found themselves asking, “What else?” Simply opening one’s eyes was not enough.

When Caleb’s vital signs suddenly plummeted, he required a craniectomy, a surgical procedure where a portion of the skull is removed to relieve pressure on the brain.

His brain had sustained additional swelling, and the surgery staved off further damage.

Doctors told the Outerbridges they needed to decide what kind of life they wanted for their child and have a plan in place in the event he does not improve.

“We never even said the words, but it was like, if things are going to keep going like this, we know what we’re going to do,” Jennifer said.

To this point, the family still believes Caleb is not done fighting.

“I just never felt in my heart like he’s gone,” she said.

Prospects

The prospect of increasing Caleb’s physical therapy to up to three hours daily if admitted to the Shirley Ryan facility means further progress toward a recovery is possible.

Putting Caleb in a nursing facility where no such progress might take place is not an option for the family, they decided.

Moving his care into their home would be a near impossible challenge.

“It feels like we are trying to pave a way for him to fight as much as he can fight,” Jennifer said.

The doctors also told them they would have to change their expectations for their child throughout the process.

“Before, it was, ‘How long until he’s back up and out?‘” Nick said. “Now it’s like, ‘Is he gonna open his eyes? Is he gonna smile?’”

Community support

After Caleb got sick, one of his teachers at BBCHS, Bill Artz, quickly set up a GoFundMe to help the family, where staff and community members donated over $10,500.

One of his friends at school started to sell bracelets for the family as well.

“It’s been amazing. Caleb is so loved,” Jennifer said.

Jennifer set up another GoFundMe page for family, friends and the community at gofundme.com/f/help-support-calebs-fight, which has since raised over $44,000.

Local businesses, including Taco John’s and Fastlane Printing, have connected to set up fundraisers.

Meanwhile, neighbors set up a meal train to bring food to the family.

“We’ve only been out here five years,” Nick noted. “We grew up in Florida, so we don’t know too many people. We just have family. It kind of speaks for Caleb. People from the high school, the siblings' schools, all the people that know us in some way shape or form, they all care about Caleb.”

Community members stepped up to donate Christmas gifts for their three other children, Noah, 10, Ella, 7, and Gracie, 4.

The Outerbridges have had no shortage of kind words and prayers.

They’ve seen Caleb Strong T-shirts being worn around town.

“I never knew people could care about someone they never met,” Jennifer said. “I just never felt that before. It’s been amazing, and it’s helped us. We had almost three months unemployed, and that GoFundMe is what took care of us.”

Both Jennifer and Nick feel gratitude for everyone who has shown up for them, including family, friends and strangers.

“Every single facet, we’ve had someone helping us, some sort of support,” Jennifer said. “It’s been wonderful. To the community, just thank you. They’ve made it possible for us to continue on. Our world has kept spinning because of them.”