- Darci Owens, a health coach with Down syndrome, was looking forward to covering the Special Olympics for ESPN — when suddenly, she couldn’t walk or talk
- Her mother, Dana Owens, tells PEOPLE her daughter was lost in a catatonic state
- After being “dismissed” by doctors, Dana was able to get help from one doctor who diagnosed the mysterious condition as a rare regression disorder
In April 2022, Darci Owens, a health coach with Down syndrome, was hoping to be an on-air correspondent for ESPN during the upcoming Special Olympics USA Games. As Alaska’s first certified Special Olympics health coach, she enjoyed motivating other athletes to lead healthy lifestyles through her entertaining YouTube and Facebook cooking show, Dining with Darci. “She’s always had this amazing ability to communicate and connect with people,” her mother, Dana, tells PEOPLE.
But that all changed during the week of April 11. The outgoing, vivacious then-27-year-old, who had competed in track and field events all her life, suddenly could barely walk. She experienced terrifying hallucinations, confusion, a loss of appetite, and catatonia. Mute and unresponsive, she was unable to perform simple tasks like feeding herself. “It was like she was walking around in a daze,” her mother recalls. “She would look right through you — there was no connection.”
Dana owns with her daughter Darci.
Courtesy of Dana Owens
These symptoms were what Jonathan Santoro, MD, Director of the Neuroimmunology Program at Children’s Hospital Los Angeles, later diagnosed as Down syndrome regression disorder (DSRD), a mysterious and rare condition causing a sudden cognitive and physical decline in 1 to 2 percent of high-functioning young people with Down syndrome.
Down syndrome is a genetic condition in which a person is born with an extra copy of chromosome 21, according to the Cleveland Clinic. This means that they have a total of 47 chromosomes instead of 46, which can affect how their brain and body develop.
Many people with Down’s go on to live happy, full lives. That’s what Darci was doing until the alarming change in her mental and physical abilities.
“We didn’t know what was happening,” she recalls. “It was like watching her slip away.”
Darci Owens in what her mother calls a “frozen” posture.
Courtesy of Dana Owens
Growing up Eagle River, Alaska, Darci was naturally athletic and loved to run. At 9 she joined the Special Olympics, competing in the 200-meter dash, relay, shot put, and long jump. “Darci was always running,” Dana says. “She loved being active and was always eager to try new things.”
Darci also attended public school, and, during her freshman year, she was a manager for the varsity basketball team. “If Darci wanted to do something,” says Dana, “we as a family found a way to make it happen.”
At 21, the Special Olympics Alaska hired her as a program assistant, and soon after she received training in Washington, D.C., to become a certified health coach. Darci blossomed in this role, traveling throughout the state to educate other Special Olympics athletes on healthy habits, including eating five daily servings of fruits and vegetables.
When the COVID-19 pandemic stalled that program, Darci pivoted to sharing her message through her upbeat and entertaining cooking show, where she demonstrated how to make recipes such as a colorful pesto pasta salad.
Darci Owens on a nature hike, before treatment for DSRD.
Courtesy of Dana Owens
But once Darci’s mysterious symptoms took hold so suddenly and Darci became a shell of her former self, Dana began a quest to find an effective treatment. She took Darci to numerous Alaska doctors, who could not provide a diagnosis.
Meanwhile, Dana continued looking for answers. Googling Darci’s symptoms, Dana discovered they fit the description of DSRD, and came upon Santoro’s research. Dana reached out to him in Los Angeles and he eventually ordered tests to be performed in Alaska including an MRI, EEG or electroencephalogram (which measures activity in the brain) and a lumbar puncture to extract spinal fluid. “Based on those findings,” says Dana, “he was able to diagnose Darci before we saw him.”
The pair flew to see Santoro in September of 2022. “I felt like finally, I had hope that this is treatable,” says Dana. “Up until that time, my husband and I just felt like an island of nobody knowing, nobody knowing what to call it, and wondering if my daughter was going to continue to get worse. Then I stepped into a light of, okay, now we can do something.”
Santoro saw in Darci a young woman unable to speak or respond. “She was looking around the room and we could tell she was in there, but she was really one of the more frankly, catatonic patients that we’d ever come across,” he tells PEOPLE. “There wasn’t a lot of interaction that I could have directly with her.”
He first prescribed Lorazepam, an anti-anxiety drug that soon helped Darci emerge from the catatonia. “She was able to give me eye contact again,” says Dana. “I missed my daughter’s voice, and I wanted so badly for her to say, ‘I love you.’ One night, about three weeks after she started on the drug, she looked at me and said, ‘I love you.’ I was just put in tears.”
Darci’s progress out of the regression and catatonia continued with added infusions of Intravenous immunoglobulin (IVIg), and later, ECT, electroconvulsive therapy in which small electric currents pass through the brain. “There was a vast increase of participation in life,” says Dana. “If I was in the kitchen, she would come in the kitchen and want to stir the food.”
The medical community has known about regression disorder symptoms for about 80 years, “but historically it was viewed as a psychiatric condition and managed with psychotropic medications,” says Santoro, who through his groundbreaking research finally named the condition in 2022 and is now leading the first clinical trial for DSRD at Children’s Hospital Los Angeles.
“We found that there is actually inflammation in the brain, we think related to the extra copy of chromosome 21 (which people with Down syndrome have),” he says, “and that the symptoms are reversible with many of the immune treatments that we’ve been using.” That’s been the case with Darci, who now makes her own breakfasts,” Dana says. She also bowls, plays floor hockey and runs for the Special Olympics. During the summer when Darci and Dana attended the National Down Syndrome Congress Conference in Phoenix, Darci sang Rachel Platten’s “Fight Song” during the conference’s talent show.
But thanks to the innovative treatments developed by Santoro — who discovered that DSRD may actually be an inflammatory condition — Darci has regained almost all of her function. “I’m 100 percent hopeful,” says Dana.
While many of Darci’s symptoms have abated, she still “continues to have some ups and downs,” says Dana, who continues to be hopeful about her recovery. The Special Olympics has a position waiting for her when she is ready to return. “That makes me feel excited,” says Dana. “We have something to look forward to and work towards. I’m telling Darci’s story right now. I look forward to Darci telling her story.”
