Edith Mölstad doesn't remember being carried by her father down the stairs and across the gravel driveway of their home in Sweden, but her parents always will. When they could not wake their 7-year-old daughter that night, they immediately knew it was serious. Only it would take months before they understood what was wrong.
Edith had just started first grade. She loved to participate in class. Outside of the classroom, she loved to play soccer, dance, and ride her bike. She was full of life, just like any other ordinary kid. Until a sudden and unexplained seizure made everyday life challenging—and far from ordinary—for her and her family.
Instead of scraping her knee riding a bike or scoring a goal playing soccer, Edith has been confined to the couch due to the unpredictability of her seizures.
"She is trapped in her own body," says Mathina Mölstad, Edith's mother. "As soon as she tries to do anything, the seizures strike."
When Edith first became ill, a definitive diagnosis eluded her physicians in Sweden. Days turned into weeks of intensive care, until she was diagnosed with febrile infection-related epilepsy syndrome (FIRES), an incredibly rare condition where minor infections can cause healthy children to develop chronic epilepsy. For Edith, it was a mild case of the flu.
The seizures affect every aspect of her life; for her safety, she required adult supervision at all times. The ketogenic diet she was prescribed and the side effects of her anti-epileptic medications made her miserable. Nothing seemed to help, and the family began to feel trapped as well, in what Mathina described as "a bubble outside all ordinary life."
Despite feeling powerless, Edith's parents would not give up. Their search for answers led them to University of Utah ÐÇ¿Õ´«Ã½, where they first heard the voice of Dr. Robert Bollo on an episode of the Scope podcast. As he discussed new ways to surgically treat epilepsy, Mathina felt a spark of hope for Edith: something she had not felt in a long time.
In partnership with Primary Children's Hospital, where Dr. Bollo is the surgical director of pediatric epilepsy, U of U ÐÇ¿Õ´«Ã½ coordinates care for medically complicated cases and offers state-of-the-art treatment such as brain-responsive neurostimulation (RNS) devices.
But despite being well-established in the United States, RNS technology is not available in Europe, so Mathina reached out to several U.S. epilepsy centers. It was the heartfelt response from a surgeon in Salt Lake City that stood out above all others.
Inspired by how hard Edith's parents fought for her, Dr. Bollo vowed to do the same. "It makes no difference whether the child comes from Salt Lake City or Sweden," he said. "We have used RNS technology to help children like Edith...with fantastic results."
At first, Dr. Bollo and his team tried to collaborate with Edith's doctors in Sweden but were unsuccessful. And because her unusual diagnosis wasn't covered under the Swedish health care system, the family would receive no financial support.
The Mölstads had already been fighting a battle against the clock—now they felt like they were losing. They couldn't wait any longer, Mathina now knew the lifesaving treatment her daughter needed was 5,000 miles away in the hands of a U of U ÐÇ¿Õ´«Ã½ neurosurgeon. They would need to come to him.
"We really had no choice," Mathina said. "Saving Edith's life is above everything."
The family would have to navigate not one but two national health care systems while juggling Edith's illness, the stress of financial uncertainty, and a global pandemic almost every step of the way. Even though it would be far from easy, getting Edith the care she needed was the simplest decision they could make.
"This is about trying to give Edith and [our] family opportunities to create memories that have nothing to do with illness," wrote Carl, Edith's dad, in the they use to document their journey. "Now we are here... It feels unreal, scary, but absolutely necessary and right."
In May, when they touched down in Salt Lake City for the first time, they were cautiously optimistic but had to confront another idea that terrified them: brain surgery for their 10-year-old daughter. And Edith would need more than one round before the RNS technology could take effect.
"Epilepsy deprives you of much of your life because seizures are unpredictable and can appear without warning," Dr. Bollo says. "You cannot trust your brain. But the brain is an organ that learns."
The RNS device both reads and stimulates the patient's individual data. It knows when and where to modify electrical activity to achieve significant seizure reduction—like a pacemaker, but for the brain. Like people, seizure patterns are unique, and Dr. Bollo's team needed to learn everything they could about Edith's brain. So they surgically placed electroencephalogram (EEG) electrodes in her brain to measure and record her brain waves.
After a week of recording Edith's seizures, she was ready for the RNS device, so her team at Primary began to move forward. On a sunny June morning, Edith's final procedure lasted just over three hours—a short procedure compared to how long they'd been hoping for an answer.
Already somewhat of a celebrity thanks to her father's blog, as the first child in Europe to receive this treatment Edith now has another claim to fame. To her parents "she is just unique in one more way."
When Mathina and Carl first heard Dr. Bollo's voice two years ago, they had no idea he would one day become Edith's neurosurgeon, but he has become like a part of the family. All three share the hope that Edith's story will inspire change; and since day one, strangers across the globe have cheered them on.
Edith's treatment is ongoing, so she will need to travel to Salt Lake City—a trip that can last up to 30 hours door to door—every three months for two years to adjust the device. But with support from Dr. Bollo's team, their online community, and newfound hope, the Mölstads feel up to the challenge.
It's been almost four years since the longest night of Carl and Mathina's lives as they waited for the ambulance to come. They would always feel those shadows, but Edith's RNS device felt like turning on a light.
Back home in Sweden, they are feeling anxious but hopeful.
"We feel very safe with the fantastic support we get from Dr. Bollo and his team...who have had the courage to stand by our side and not let us down," Mathina says. "We are confident it will all be worth it in the end."
