Health Coach Was Hoping to Cover Special Olympics for ESPN — Until a Mysterious Condition Left Her Mute (Exclusive)

• 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 “discharged” by doctors, Dana was able to get help from a doctor who diagnosed the mysterious condition as a rare regression disorder

In April 2022, Darci Owens, a health coach with Down syndrome, hoped to be an active correspondent for ESPN during the upcoming Special Olympics USA Games. As Special Olympics Alaska’s first certified health coach, she enjoyed motivating other athletes to lead healthy lifestyles through her entertaining cooking show on YouTube and Facebook, Dining with Darci. “She has always had an amazing ability to communicate and connect with people,” her mother, Dana, tells PEOPLE.

But that all changed during the week of April 11. The sociable, lively 27-year-old at the time, who had competed in athletics all her life, suddenly could barely walk. She experienced terrifying hallucinations, confusion, loss of appetite and catatonia. Mute and unresponsive, she was unable to perform simple tasks such as feeding herself. “It was like she was walking around in a daze,” her mother recalls. “She’d look right through you—it didn’t matter.”

He owns Dana with his daughter Darci.

Courtesy of Dana Owens

Those symptoms were what Jonathan Santoro, MD, director of the Neuroimmunology Program at Children’s Hospital Los Angeles, later diagnosed as Down syndrome regressive disorder (DSRD), a mysterious and rare condition that causes 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 they have a total of 47 chromosomes instead of 46, which can affect their brain and body development.

Many people with Down syndrome go on to live happy, full lives. This is what Darci did 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 a position her mother calls “frozen.”

Courtesy of Dana Owens

Growing up in Eagle River, Alaska, Darci was naturally athletic and loved to run. At the age of 9, she joined the Special Olympics, competing in the 200-meter race, relay, shot put, and long jump. “Darci was always running,” says Dana. “She loved to be active and was always eager to try new things.”

Darci also attended public school, and during her freshman year was the manager of the varsity basketball team. “If Darci wanted to do something,” says Dana, “we as a family found a way to make it happen.”

At age 21, Special Olympics Alaska hired her as a program assistant, and soon after, she trained in Washington, DC to become a certified health coach. Darci flourished in this role, traveling across the state to educate other Special Olympics athletes about healthy habits, including eating five daily servings of fruits and vegetables.

When the COVID-19 pandemic halted that program, Darci turned to sharing her message through her upbeat and fun cooking show, where she demonstrated how to make recipes like a colorful pesto pasta salad.

Darci Owens on a nature trip, before treatment for DSRD.

Courtesy of Dana Owens

But once Darci’s mysterious symptoms appeared 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 doctors in Alaska, who could not diagnose.

Meanwhile, Dana continued to search for answers. Googling Darci’s symptoms, Dana found they fit the description of DSRD and came across Santoro’s research. Dana reached out to him in Los Angeles and he eventually ordered tests in Alaska, including an MRI, EEG, or electroencephalogram (which measures activity in the brain) and a lumbar puncture to draw spinal fluid. “Based on those findings,” Dana says, “he was able to diagnose Darci before we saw him.”

The couple flew to Santoro in September 2022. “I felt like I finally had hope that this could be cured,” says Dana. “Up until that time, my husband and I felt like an island that no one knew about, no one knew what to call it, and wondering if my daughter was going to get worse. Then I stepped into the light, okay, now we can do something make.”

Darci Owens and Jonathan Santoro, MD, director of the Neuroimmunology Program at Children’s Hospital Los Angeles.

Courtesy of Dana Owens

Santoro saw in Darci a young woman who could not speak or answer. “She was looking around the room and we could tell she was in there, but she was really one of the more honest, catatonic patients we’ve ever come across,” he tells PEOPLE. “There wasn’t much interaction I could have directly with her.”

First he prescribed Lorazepam, an anti-anxiety drug that soon helped Darci out of catatonia. “She managed to make eye contact with me again,” says Dana. “I missed my daughter’s voice and wanted her to say, ‘I love you,’ so much.” One night, about three weeks after she started taking drugs, she looked at me and said, ‘I love you.’ I just burst into tears.”

Darci’s recovery from regression and catatonia continued with additional infusions of intravenous immunoglobulin (IVIg), and later with ECT, an electroconvulsive therapy in which small electrical currents are passed through the brain. “There’s been a huge increase in participation in life,” says Dana. “If I was in the kitchen, she would come into the kitchen and want to stir the food.”

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The medical community has known about the symptoms of regression disorder for about 80 years, “but historically it was viewed as a psychiatric condition and treated with psychotropic drugs,” says Santoro, who finally named the condition in 2022 with his groundbreaking research 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 it’s related to the extra copy of chromosome 21 (that people with Down syndrome have),” he says, “and that the symptoms are reversible with many of the immune treatments he’s used on me.” That was the case with Darci, who now makes her own breakfast,” says Dana. She also bowls, plays floor hockey and runs for the Special Olympics. Over the summer when Darci and Dana attended a National Down Syndrome Congress conference in Phoenix, Darci sang “Fight Song” by Rachel Platten during the conference talent show.

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But thanks to innovative treatments developed by Santoro — who discovered that DSRD may actually be an inflammatory condition — Darci has regained nearly all of her function. “I hope 100 percent,” says Dana.

Although many of Darca’s symptoms have subsided, she still “still has her ups and downs,” says Dana, who remains hopeful about her recovery. Special Olympics has a place waiting for her when she’s ready to return. “It makes me excited,” says Dana. “We have a lot to look forward to and a lot to work on. Right now I’m telling Darca’s story. I’m looking forward to Darca telling her story.”

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Source: HIS Education