She Knew Something Was Wrong With Her Daughter the Day She Was Born-It Took 19 Years To Get a Diagnosis
No one likes waiting for answers, especially when it has to do with their health. How many times have you Googled your symptoms, searching for an immediate explanation for them along with a (quick-acting) remedy? Or perhaps you've experienced frustration with your primary care provider when they can't pinpoint a reason for your discomfort and recommend more testing instead.
Lisa Adarve, who lives in Ohio, knows this frustration all too well. Lisa knew immediately after her daughter Lucia was born that something was off, but it took 19 years until she had an answer explaining why. After almost two decades of doctor's appointments, Lucia was diagnosed with Jordan's syndrome, a rare neurodevelopmental disorder that affects brain cell development and function.
Jordan's syndrome is characterized by developmental delays, seizures, a large head circumference, vision defects, low muscle tone, attention disorder, social and sensory challenges, disordered sleep and feeding difficulties. It wasn't until after Lucia was referred to Cleveland Clinic's Undiagnosed Disease Clinic, where she underwent genetic testing (Whole Exome Sequencing), that she was diagnosed.
Parade spoke with Lucia and her mom, Lisa, about their long search for a diagnosis, the earliest symptoms Lucia experienced and what her life is like now living with Jordan's syndrome.
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A Relentless Pursuit of Answers
Lucia is the youngest of five kids. "[My mom] knew how a safe pregnancy felt, and she had mother's intuition that something was wrong when she was pregnant with me," says Lucia, who is 19 years old now.
Lisa adds to this, saying that Lucia's birth was not like her previous four children's births. Due to severe low muscle tone, Lucia lacked the strength for the journey out of the birth canal, which caused her to get stuck on Lisa's pelvis and resulted in a broken clavicle. "I knew something felt different, but I wasn't worried yet," Lisa explains.
Over time, Lisa noticed other symptoms that set Lucia apart from her other children. Lucia's neck was floppy, and she couldn't hold her head up. She missed important developmental milestones and her vision wasn't tracking.
Lisa brought Lucia to several doctors, but none of them had any answers or seemed that concerned. "A lot of times, they would say, ‘she's fine,' or they would do an MRI because her head was larger [than average]," Lisa says. Lucia was always being sent to various doctors for testing, but they never had any answers for why she was outside of the normal range for typical child development.
Lucia admits she's always felt different from other kids. She wasn't as active as other children, which made her believe she was lazy. At school, she had trouble keeping up academically and struggled with social interactions. She says her teachers didn't make an effort to help her. "Everything was a struggle for her, like learning how to tie her shoes, ride a bike or how to swim," Lisa tells Parade.
Then, an unexpected disaster made everything more complicated. When Lucia was five years old, she got carbon monoxide poisoning on a boat, which caused her to experience seizures. Lucia received hyperbaric oxygen chamber treatment and was hospitalized. "After that, she regressed and didn't even know her letters or sounds. It was like she turned back into a baby," Lisa says, adding that it wasn't until Lucia was in sixth grade that she could do basic reading.
Getting a Diagnosis
As the years passed, Lisa spent countless hours each day working with Lucia, teaching her basic concepts. It took her 10 times as long to learn them as a typical child, but neither Lisa nor Lucia gave up. Lisa also continued to shuttle Lucia to doctors' appointments for tests, but the doctors were stumped.
It was Lucia's neurologist at Cincinnati Children's, Dr. Todd M. Arthur, MD, who finally made some headway in November 2025 when Lucia was 18. "Dr. Arthur loves a good puzzle. He made a list of all my symptoms and became very energized trying to figure it out," Lucia says. After a few hours of listening to Lucia and her mom, Dr. Arthur referred them to Cleveland Clinic's Undiagnosed Disease Clinic. There, Lucia underwent genetic testing and was diagnosed with Jordan's syndrome when she was 19.
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Living With Jordan's Syndrome
Neither Lucia nor her mom had heard of Jordan's syndrome before the diagnosis. Many people with Jordan's syndrome can't eat, drink or walk. Lucia credits her mom's dedication to working with her for her abilities. "There are only 482 people in the world with Jordan's syndrome. I'm the 482nd," Lucia says. "But there may be more people with it that haven't been diagnosed," Lisa adds.
Jordan's syndrome makes Lucia susceptible to seizures, and Lucia credits her dogs (a mutt she used to own named Angelo and her current dog, an Australian shepherd named Mufasa) with saving her life several times. For example, Lucia says that one time, she had a seizure while taking a shower and hit her head on the granite floor. Mufasa barked until her parents rushed in to help her. Because of this, Lucia has become very passionate about advocating the importance of service dogs.
Finally having a diagnosis has provided a pathway forward. Lucia is now on medications to help control her seizures, which she says have helped her feel more energized-a stark difference from the constant lethargy she felt before. She is also doing better at school. Currently, Lucia is 19 and a sophomore at Purdue Global, pursuing a degree in criminal behavioral science.
"The genetic testing [that led to the diagnosis] has been a lifesaver for us. I know some people are scared of genetic testing because they don't want to find out if anything is ‘wrong,' but it's better to know so that you can manage or treat it," Lisa says.
What Lisa hopes other people will take away from Lucia's health journey is to never stop advocating for yourself. She knew from literally day one that something was different about Lucia and she never stopped searching for the reason why. If it wasn't for her steadfast search, Lucia may have never been diagnosed. It's a reminder to never give up on your-or your loved one's-health.
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Source:
- Levine, A. D. and Chung, W. K. (2023). Clinical features of PPP2 syndrome type R5D (Jordan's syndrome) to support standardization of care.Cold Springs Harbor Molecular Case Studies. 9(3):006285.
- Jordan's Syndrome. Jordan's Guardian Angels.
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