“I try to stay positive,” Livi said, surrounded by her family in her Bethesda, Md., home. “It’s unfortunate that everything happened. You just have to make the best of it. Even though it’s difficult, it could be a lot worse.”
Since the crash, she’s undergone more than half a dozen surgeries and hundreds of hours of speech and occupational therapy and suffered a severe infection. Her medical expenses top $1.7 million.
Once an associate designer for a D.C. architectural firm, she’s trying to get back a sense of normalcy — and, she hopes, some feeling in her body. Livi, 27, is optimistic an experimental, unproven treatment she began this summer is part of the solution.
Hopeful for signs of feeling
It’s early in her recovery, but Livi has made progress. She’s gone from being in a coma, unable to talk and using a feeding tube to swallowing, eating solid foods, speaking and carrying on a conversation. But doctors say there’s no clear path that ensures future advances.
She turned to an experimental form of stem-cell-related injections they hope will rejuvenate her nerve connections and help her regain some movement, even if only to power her wheelchair. She realizes the treatments are a long shot, as scientists and medical associations have raised questions about whether such methods work.
The spinal cord is a bundle of nerves that sends messages between the brain and the rest of the body to control movement and feeling. The two vertebrae at the top of Livi’s neck are severely damaged. Those vertebrae, along with nerves and muscles, control functions such as breathing and allowing movement of the limbs, neither of which Livi can do on her own.
Her parents took her to a New Jersey radiologist who says he specializes in regenerative medicine, after Livi saw recommendations from members of an online spinal cord injury group. Livi said she didn’t qualify for clinical trials, which often are affiliated with universities and have more regulations, because of the extent of her injuries and her ventilator.
If Livi shows progress, she could receive another treatment in six months.
“I hope it gets my lungs to work on their own,” Livi said. “Even if it just helps me to shrug my shoulders, that would be great.”
It wasn’t always that way.
Livi, the oldest of three girls, came to the United States from Albania at age 7. Her father had come to Austin for a job in 1998, then sent for her mother and the girls before moving the family to the Washington area in 2000.
Livi liked roller coasters and enjoyed swimming and playing volleyball — sometimes at the sand courts near the Lincoln Memorial. She graduated in 2010 from Walt Whitman High School in Bethesda.
After earning a bachelor’s degree in interior design from Marymount University in Arlington, Va., she got a job as a designer at an architecture firm and bought a condo in Foggy Bottom.
She visited her parents’ Bethesda home for dinner every Sunday. She took cycling and yoga classes and traveled to France, Amsterdam, Italy, Spain, Greece, Ecuador, Mexico and Germany.
She was where she wanted to be in life. Then came Sept. 17, 2017.
'What happened to me?'
A day earlier, she had competed in her first triathlon, placing 10th in her age group, at Dewey Beach, Del. She had gone to dinner with friends and spent the night at a hotel.
About 10 a.m. the next morning, she left the hotel alone to buy a bottle of water for the ride home, but never made it. A speeding drunk driver swerved off the road, striking Livi from behind on the sidewalk.
She was thrown 10 feet into the air. A police sergeant called the crash one of the worst he’s seen, adding that Livi “never saw it coming.”
Unconscious, Livi was flown to a trauma center. She was unable to talk, and with no ID on her, she was labeled Jane Doe.
Livi wasn’t responding to text messages from her friends, who were ready to check out of their hotel. They walked outside to find emergency vehicles, then figured out Livi had been struck after talking to passersby and police.
Her friends alerted her parents, who frantically called hospitals to find her. Livi’s mother, 57-year-old Rezarta Pejo, described to hospital officials her daughter and the unique tattoo on her right shoulder blade: a double-headed black eagle — a symbol from the Albanian flag. They found her at a Delaware trauma center.
Livi didn’t remember the crash. Doctors had put in metal plates to stabilize fractures between some of her vertebrae. She was unconscious for 20 hours and underwent several surgeries before waking. Livi was in a coma when her parents were allowed to see her at 9 p.m. that night. They learned she would be paralyzed.
“I couldn’t feel a thing,” Livi said. She later asked her mom, “What happened to me?”
Her mother explained there had been an accident, and she had been seriously hurt. Her parents, not wanting to scare her, tried to be encouraging.
Her father, Ben Pejo, a 59-year-old architect, said he was stunned when he learned the extent of her injuries.
“We didn’t believe it until we saw her, and then we had to accept it,” he said.
Investigators later identified the driver as John Tai D. Johnson, then 29, of Wilmington, Del. Court documents indicate he was drunk and had cocaine, PCP and marijuana in his system at the time of the crash.
He is serving a sentence of two to five years for an unrelated theft in Pennsylvania, according to a spokeswoman at the Pennsylvania Department of Corrections. Upon his release, he will be tried in Delaware in Livi’s case. He faces charges of vehicular assault, driving under the influence of drugs and other charges that could bring him five years in prison.
Johnson’s public defender declined to comment.
'I have nothing to lose'
Livi longs to feel aches, discomfort — any sign the treatment is working. Pain could mean she’s regaining some feeling.
“It means my nerves are connecting to my brain,” she said. “I’d rather feel something rather than have my body feel completely numb.”
The treatment seems to help Livi need less frequently a medication that helps with low blood pressure, her family said. But stem cell treatments aren’t without controversy.
Doctors typically use a patient’s belly fat, blood or bone marrow for such treatments. More recently, some have been offered using placentas, umbilical cords or cord blood. The Food and Drug Administration has warned that such experimental treatments are unproven and not approved by the agency.
Livi is receiving an exosomes stem-cell-related treatment, which involves cells from donated placentas. The cells are “cleaned and purified,” Livi said, so they don’t “contain DNA,” then injected into her spine and blood.
Livi said she hopes the treatments “make it easier for signals to pass from the brain, past the injury level and to the rest of the body.”
Douglas Spiel, the New Jersey doctor, said the treatment, which costs $12,000 per injection, can decrease inflammation and increase cell growth for those with injuries to the spinal cord.
“You create a divot on a golf course and then you put the grass back down so it will grow,” he said. “We’re trying to turn on the cells that are there and repopulate around that injury.”
Paul Knoepfler, a stem cell biologist and professor at the University of California at Davis School of Medicine, said he’s skeptical of clinic treatments involving exosomes because that field of study is new, and those exosomes are untested. He said he believes such treatments aren’t ready to be marketed to — or used on — the public.
“It’s just way too early to be using it on patients,” Knoepfler said. “We just don’t know enough. There’s not enough data to support its use.”
He wrote a blog post last year casting doubt on claims from Spiel’s website that such treatments can possibly help conditions ranging from spinal cord injuries to stroke to baldness. That context “risks giving patients the wrong idea that exosomes are some kind of proven panacea,” Knoepfler said.
Rebecca Laming, vice president of marketing at the Christopher & Dana Reeve Foundation, said stem cell treatments for spinal cord injuries are in their infancy and “patients need to be very cautious when seeking treatments.” The foundation was started by actor Christopher Reeve, who became paralyzed from the neck down after he was thrown from a horse.
One of Livi’s doctors — Carlos E. Picone, a pulmonary specialist at Sibley Memorial Hospital in District, said the extent of her injuries will make it difficult for her to regain much movement. He called her case “tragic” and compared the stem cell treatments to “putting a patch over the injury.”
“I think it’s wrong” to assume the treatments will bring much improvement, Picone said. “I don’t want it to be wrong. But I think we need to be grounded” in science.
Livi said she’s talked online to people who have spinal injuries and “gotten good results” from stem cell treatments. She said she realizes any benefits could be minimal at best, but she remains hopeful.
“Either it works or it doesn’t,” she said. “I think it’s worth a try because I have nothing to lose.”
'She's a very, very tough lady'
Livi is using computer software that detects eye movements. Her pupil acts much like the cursor and mouse to work the software.
She’s hoping to do work for her old architecture firm, designing office spaces. When her team at IA Interior Architects recently won awards for design work on new offices in Baltimore, she attended the ceremony.
She also has friends who stop by to visit or help her family take her out to dinner. She’s created abstract paintings with the help of a sister, something she never had time to do.
“I was so independent before,” she said, as her mom wiped a strand of hair from her face one recent afternoon. “I liked having my family around, but now I need them 24/7.”
After the crash, Livi spent eight months in hospitals and a rehabilitation center in Delaware and Pennsylvania, prompting her mom to leave work to care for her.
Christopher S. Formal, a doctor who specializes in spinal cord injuries at Magee Rehabilitation Center in Philadelphia, recalled the support and love Livi received from her family and said she’s made progress for someone with such extensive injuries.
“There’s not a lot of people with that combination of injuries who make that much progress. She’s done it,” he said. “She’s very hard-working. She’s a very, very tough lady.”
Ultimately, Livi hopes to get off the ventilator and travel again. Maybe the family can resume its annual trip to Albania.
For now, she said, she’s happy to have moved a few weeks ago to a renovated home in Bethesda, close to the family’s previous home near the National Institutes of Health. Her parents spent months trying to find a larger house to make room for her wheelchair. And Livi was able to use computer software to help make it accessible.
Contractors installed an elevator, knocked out walls, widened doorways and added a third floor, which the family hopes to use as a physical therapy space. There are new balconies so Livi can be taken outside and get fresh air.
Unlike in her previous split-level home, she can get her wheelchair into the kitchen and instruct one of her younger sisters while cooking — one of Livi’s hobbies.
Her family retrofitted a bedroom on the second floor, so Livi is close to her parents. She picked photos from her travels, and her sister plans to hang them in Livi’s new room.
“She has never complained about anything. She’s a very strong girl,” Ben Pejo said of his daughter, his eyes filling with tears. “She’s unbelievable.”
Alice Crites contributed to this report.