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“He wasn’t a stay-still person,� said his mom, Brenda Luter.

But that Josh, his parents say, is gone.

The new Josh, 23, has been living with a traumatic brain injury for more than four years, the result of a motorcycle wreck when he was a freshman in college. His parents are still getting to know this Josh — and he’s changing all the time.

A few months after the accident, the couple started a TikTok page, , as a way to celebrate his progress and keep family and friends in the loop about this edition of Josh’s life. It has unexpectedly turned into much more, providing them with a compass — and a community.

The account has gained 420,000 followers — strangers, at least initially, who have become invested in the Luters’ story. They ask questions about how much Josh can communicate, why his fingers curl in, how well he sleeps. They cheer Josh’s victories, trade advice and offer prayers. Sometimes, they send cards and small gifts.

“I have been following Josh for a while now and he is such an inspiration. He has touched my heart so much,� one person wrote in a message to the Luters.

Some videos have been viewed millions of times, with thousands of comments posted. Aaron and Brenda, both 55, respond to as many as they can.

They say they have gained as much from using the social media platform as their followers have. They have discovered new tools and therapies. They’ve connected with others who understand what they’re going through. And they glimpse what might be possible for Josh in the future.

“We’re learning about what it means to be a special-needs family,� said Brenda.

Sheared neurons

Since he was a little boy, Josh had been obsessed with things that go — especially planes. Every time an air show was in town, the Luters went. Josh would marvel at the dives and rolls and hairpin turns. One summer, the family took a vacation to see the National Air and Space Museum in Washington, D.C. At Lafayette High School, Josh was in the Air Force Junior ROTC program.

“It was all about flying,� said Aaron.

Josh decided to study aviation at Southern Illinois University-Carbondale, starting classes in the fall of 2020, when the COVID-19 pandemic limited socializing. Still, he loved living on campus. He was always up for an adventure, even chipping in to buy a motorcycle with three friends. He didn’t tell his parents.

On a bright Sunday afternoon in April 2021, he and a buddy took their bikes out for a ride. They were just outside of Carbondale when a car made a turn in front of them. Josh couldn’t stop in time. He broke multiple bones, punctured his lungs and dissected the carotid arteries in his neck, causing a series of strokes. He was wearing a helmet, but the impact sheared neurons in his brain. He was 19.

Aaron and Brenda were in California, about to head back home from Napa Valley. The wine country trip with friends was a prelude to what their life would be like as empty nesters. Their younger son, Alex, would be leaving for the University of Arkansas in the fall.

On the way to the airport, they got an alert from the Life 360 app. It had detected a crash. They couldn’t reach Josh, but the location-sharing app tracked his phone to a hospital in Carbondale.

By the time Aaron and Brenda arrived in ºüÀêÊÓƵ, Josh had been airlifted to Barnes-Jewish Hospital.

Despite all the injuries, Aaron said, “he still looked just like Josh� — tall and muscular, with sandy hair that had a little curl at the ends.

The way his wrist was splinted almost made it seem like he was waving to them from his hospital bed.

For weeks, the Luters kept vigil in his room at Barnes. They papered the walls with notes and cards and replayed audio texts from family and friends so Josh could hear their voices. There were multiple surgeries and constant brain-pressure monitoring. Josh got a tracheotomy and a feeding tube.

When Aaron and Brenda had a minute, they posted updates to their GoFundMe and CaringBridge pages. They begged for prayers.

“It was all very desperate from the very beginning,� Aaron said.

One day early on, a doctor took them aside. “This is going to change his trajectory,� the doctor told the couple. “We don’t know what it’s going to change to.�

His parents did not withdraw Josh from college right away. It was hard to think that the life he had always imagined was not going to come to be. Maybe in six months, they thought, Josh would be back to himself.

Or maybe a year, or two years.

Setbacks and progress

Brain injuries are more common than many people realize, said Maureen Cunningham, executive director of the , a support and advocacy nonprofit based in Maryland Heights.

Traumatic brain injuries are the leading cause of death and disability for Americans under the age of 45, according to the Centers for Disease Control and Prevention, and about 80,000 people are permanently impaired by such an injury each year. Falls are the most common cause, followed by motor vehicle crashes. Symptoms can range from chronic headaches and vision problems to loss of speech and paralysis.

“There is not as much awareness until it happens to your family or someone you know,� Cunningham said.

The Luters’ circle showed up for Josh in the weeks and months after the accident. They brought over dinner and held fundraisers. But no one had been through anything like this before. And the information that Aaron and Brenda found online was geared toward people with injuries less severe than Josh’s.

Josh — who couldn’t speak, walk or hold himself upright — was among the most extreme patients. After he was transferred to Ranken Jordan Pediatric Bridge Hospital, he began rigorous therapy sessions: stretching in a pool, trying to swallow an ice pellet, standing on a vibrating “tilt� table, pedaling a bike with the assistance of electrical muscle stimulation.

His parents started posting videos to TikTok so friends and family could see what Josh was up to.

Eventually, he could follow movements with his eyes and hold up his head. He couldn’t speak, but he laughed at funny sounds and grunted through his exercises.

In February 2022, old classmates and neighbors lined the sidewalk along the Luters’ cul-de-sac, clapping and holding signs. “Welcome home, Josh!� they read. “We love you!�

“Are we ready to handle this?� Aaron asked his wife.

The staff at Ranken Jordan had provided plenty of direction. Aaron and Brenda knew how to administer Josh’s medicines, move him from his chair to his bed, use his feeding tube and bathe him.

Nurses and therapists came throughout the day to help. But the learning curve was steep.

“It was a very clumsy few weeks,� Brenda said.

They continued documenting their journey on TikTok: Josh practicing with an eye-gazing device, visiting with friends and getting licks from his dog, Penny.

There have been setbacks. Josh had kidney stones and ingrown toenails so painful they had to pause therapy. Discomfort has been a daily presence. Muscle spasticity, which keeps muscles from relaxing, affects Josh’s whole body, bending his hands into fists and causing him to chew through a mouth guard every couple of months.

But there has been joy, too — small delights, such as getting a haircut from his favorite barber or watching his dad play guitar during church services. And there have been big wins, like passing a “swallow test� so he could eat soft foods, including his grandpa’s homemade mashed potatoes.

Sometime in there, the TikTok page caught fire. One day a couple of years ago, the Luters noticed that a post — Aaron and Brenda demonstrating in his sling — had 4 million views.

It was clear that Josh’s story was resonating, both with families who had loved ones with brain injuries and with people who knew nothing about the condition but were drawn to the Luters’ ups and downs, the gentleness with which they treat their son, the faith they have that things will keep getting better.

“The dad we all want,� one person commented on a video in which Aaron wraps Josh in a bear hug.

Another person wrote: “My mother had a terrible stroke and had to relearn everything. I saw the spark in her eyes and I see it in his eyes too. Slow progress is still progress!�

Trading information

One TikTok follower, Kendra Winner of Massachusetts, is modifying her house for her 20-year-old son, who has a brain injury from a car accident 18 months ago. One day, she sent a message to the Luters. Brenda called Winner that night.

The Luters had to become experts at navigating insurance roadblocks and nonprofit applications to secure treatments and make their home accessible. Brenda, a former teacher, earned her nursing degree last year to better care for Josh.

Just hearing from someone who had been in her position helped Winner.

“The biggest challenge is finding resources,� Winner said. “This is one of the most devastating things to happen to a family, and there’s no guidebook.�

The time she spends reaching out is worth it, said Brenda. “It’s selfish. We get information, too.�

One brain-injury survivor confirmed the Luters’ suspicion that the clanging of dishes when cleaning up after dinner had been bothering Josh’s ears. Another suggested an oxygen chamber that decreases inflammation.

The founders of Billy Footwear, a company that makes “universal-design� shoes that zip across the top, sent Josh a pair that resemble his beloved Nikes and can accommodate his ankle braces.

After seeing them on TikTok, Tom Gallup of Maryland ordered a pair for his son, Andrew.

“Andrew’s feet can finally have shoes,� he wrote to Brenda. “First time in 10 years!�

Gallup has been caring for his son, 35, since he was hit by a car a decade ago. He founded a for caregivers of loved ones with severe brain injuries and came across the Luters’ TikTok page in the spring. He was blown away.

“My hat’s off to them,� Gallup said. “It helps raise awareness. What an education.�

Josh is learning every day, and so are his parents. They don’t shy away from the unanswerable.

One of the their most popular videos, with almost 9 million views, addresses a question they hear all the time: ?

The truth is, no one knows what Josh knows. His brain is still rewiring. He’s processing everything around him, his parents believe, just more slowly and with different connections.

“We tell him that he’s getting better, and we tell him that he’s here and he’s safe,� Aaron explains in the clip, while helping Josh sit up.

“So we just keep on rolling.�