PROVO, Utah – Riley Horner wakes up every day thinking it’s June 11th, the day she lost her ability to create memories.
Her story stumped doctors and captivated the nation – now, five months later, Riley has found a beacon of light in Utah. She's currently undergoing treatment at Cognitive FX, a post-concussion treatment center in Provo.
When she's not working with Cognitive FX specialists, the16-year-old has been enjoying the nature that now surrounds her.
“It’s really pretty, I love it,” Riley told local TV news station KSTU with a smile. “I will pack my things and live in the mountains.”
But if you ask Riley, it’s the first time she’s been there.
“I don’t know where I’m at, no,” Riley shook her head. “I don’t understand how we got here, or how long we’ve been here, or why we’re here.”
This constant state of confusion has been Riley’s reality for 160 days.
“What happened? Why am I here? Why are we in Utah?” she said as she rattled off unknowns.
She's now lost 3,840 hours and counting.
“When I try to look back, it’s just not there, there’s nothing there,” said Riley.
To understand Riley’s story, we have to rewind to June 11, 2019. Riley was at an FFA convention in Springfield, Illinois.
“We were meeting up with a bunch of people,” Riley squinted as she said the last thing she remembered.
In an Instagram video captured by one of the teens at the closing night dance, you can see a boy crowd surfing, then he drops – falling on top of Riley.
That’s when everything went dark.
“They took her straight to the hospital from the dance,” said Riley’s mom, Sarah Horner. “They released her; said she was fine.”
“Once we picked up Riley, she started having seizures in our backseat and obviously we knew she was not okay,” Sarah explained that started a series of 30 to 45 seizures over the next few hours.
Riley’s family knew it was bad, but it was even worse than they imagined -- the 16-year-old had become stuck in a loop of resets.
“It’s like I’m broken,” said Riley.
Every two hours, her brain is a fresh slate.
“It’s just like, what? What happened?” Riley said.
As she goes through her day, Riley feels "foggy." She describes it as a feeling, some things seem familiar, but she can’t remember doing anything.
“Anything that I’ve been through recently, it’s just not there and so when people talk about it it’s just really, it’s so confusing because it didn’t happen to me,” Riley explained.
The next morning, it’s like the day before never happened. She wakes up thinking it is still June 11 at the FFA convention.
“When she realizes she’s not there, she knows something’s wrong and then she goes to her phone, she’ll ask questions sometimes, sometimes she doesn’t,” said Sarah. “Sometimes she’ll say, ‘why is there snow on the ground in June?’”
“I have notes on my phone, when I got up this morning there’s like thousands of notes,” Riley said as she flipped through pages of entries on her cellphone.
Throughout the five months since the accident, Riley has gone to five different hospitals and has seen countless doctors.
“He told us she has a concussion and she’ll be better in a couple of days,” Riley said, reiterating what one of the doctors told her.
But with each specialist and hospital, they found more of the same.
“He looked me straight in the face and said, ‘I have no idea what’s wrong with her,’” said Sarah. “We’re at a really good hospital… what do you do?”
Riley had turned into a medical anomaly.
“This is unknown, there’s no protocol, there’s no plan for this,” Sarah said. “It’s horrible.”
All the while, Riley’s life has gone on – without Riley.
“People see her as normal and nothing’s wrong with her, but I see that she’s lost half of her junior year of high school, she’s lost her junior homecoming … she’s lost friends, she’s lost her boyfriend,” said Sarah.
Still, it’s Riley’s future that scares her family the most.
“If she doesn’t get her memory back, right now she’s probably okay, but a year or two years, you’re going to see a difference, she’ll still be a 16-year-old girl,” said Sarah.
“She couldn’t get a job, she couldn’t be on her own, she probably couldn’t have a boyfriend, a husband, she couldn’t have kids … at that point, I just see her future is done,” Sarah continued. “I get that she’s still here, she’s still living, she’s still breathing, but not having a memory, not being able to remember what you are doing every day, does affect your life.”
With each failed doctor’s visit, regaining Riley’s life felt hopeless.
“I’m not the same Riley,” Riley said shaking her head.
Then, on the four-month anniversary of the accident, everything changed.
“Her story went viral,” said Sarah.
They started receiving messages from places around the country, but one stood out above the rest.
“We’ve been to all of these doctors in two different states, now we have somebody out in Utah? That says they can fix her?” Sarah said with disbelief.
So, they got on a plane.
“I believe this is it, this has to be it, we don’t have a backup plan,” Sarah said.
Riley’s mom now calls Cognitive FX the "miracle in the mountains."
“It’s just basic science applied properly,” said Dr. Mark Allen, a clinical neuroscientist at Cognitive FX and Riley’s doctor.
“So, this is hers,” he said as he pulled up a 3D image of Riley’s brain. “I can tell by looking at it that this one’s not totally normal.”
One brain scan revealed the answers they were looking for.
“The initial scan showed all the typical, all the most typical, brain hallmarks of having suffered a concussion,” Allen explained.
To put it simply, this issue comes from a disconnect in Riley’s brain in the way the cells receive oxygen.
“What happens is that little communication system breaks down, and it’s fixable and it’s really a minor issue, but it leads to major problems,” Allen continued. “The ultimate goal is to get the system back online.”
They believe by fixing the issues in the brain, the memory problems will resolve.
“We can coax the system back into working order,” said Allen.
Using the results, they can then concoct a ‘cure’ of sorts using a combination of different physical and mental therapies.
The therapies help to rebuild the connection in the brain by pairing exercises that rely on coordination, strenuous exercise and memory – used in a specific sequence for set amounts of time, it leads to cognitive rehabilitation.
Most patients do one week of treatments but given Riley’s unique circumstance she took part in two weeks' worth.
“I’m very hopeful that the ‘now’ will come back and I can make memories and I can move on from this,” Riley said.
On day 154, Riley had a turning point – her first memory.
“We are in Utah; do you know why?” Sarah asked Riley as she woke her up.
“For a doctor,” Riley replied. “It’s at Cognitive.”
“She’s getting fixed, it’s working, whatever they’re doing it’s working!” Sarah said.
With each day, Riley gets stronger mentally and physically. She said she owes it all to the "miracle in the mountains."
“Utah already is going to hold a special place in my heart even if I don’t get all the way better,” Riley said. “They’re not going to give up on me, so I’m not going to give up on them.”
By the end of week one, Riley had made a handful of memories – mostly food-related.
By the middle of week two, Riley was able to remember almost everything and finally started to "act normal." In a message to KSTU, Sarah said, “It’s truly a miracle, I don’t know what else to say! I have seen stuff here and there, but last night it was real to me that I have my daughter back! She will have a future!”
Riley’s will do a final brain scan before being sent home with a 4-week treatment plan. Her eye rehabilitation treatments will continue for another four months.
“I have to repay them somehow, I have to repay because they’re giving me my life back,” Riley smiled.
Riley has always wanted to pursue a career in medicine. She said now, she wants to be a neuroscientist so she can help others like the doctors at Cognitive FX helped her. They did already offer her a job, after all.
Considering the experimental nature of the therapies, the costs were not covered by insurance. The family has set up a fundraising page to pay for the therapies (ringing in at $9,000 per week), as well as the other treatments and incidentals. You can find the page here.