Edith Mölstad doesn't remember being carried by her father down the stairs and across the gravel driveway of their home in Sweden, 但她的父母总是这样. 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.
伊迪丝刚开始上一年级. 她喜欢参与课堂活动. Outside of the classroom, she loved to play soccer, dance, and ride her bike. 她充满活力，就像其他普通的孩子一样. 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. 几天变成了几周的重症监护, until she was diagnosed with febrile infection-related 癫痫 syndrome (FIRES), an incredibly rare condition where minor infections can cause healthy children to develop 慢性癫痫. 对伊迪丝来说，这是轻微的流感.
The seizures affect every aspect of her life; for her safety, 她需要成人全程监护. The ketogenic diet she was prescribed and the side effects of her anti-epileptic medications made her miserable. 一切似乎都无济于事, 这家人也开始感到被困住了, 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 Health, where they first heard the voice of Dr. 罗伯特豌豆粉油煎饼 在一个 这是Scope播客的一集. 他讨论了手术治疗的新方法 癫痫, 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. 博洛是小儿癫痫的外科主任, U of U Health coordinates care for medically complicated cases and offers state-of-the-art treatment such as 脑反应性神经刺激（RNS）装置.
尽管在美国已经很成熟, RNS技术在欧洲不可用, 所以马蒂娜联系了几位美国律师.S. 癫痫中心. It was the heartfelt response from a surgeon in Salt Lake City that stood out above all others.
伊迪丝的父母为她所做的努力鼓舞了她. 博洛发誓也要这么做. "It makes no difference whether the child comes from Salt Lake City or Sweden," he said. "We have used RNS技术 to help children like Edith...效果非常好."
起初，Dr。. 博洛和他的团队 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, 这个家庭将得不到任何经济支持.
The Mölstads had already been fighting a battle against the clock—now they felt like they were losing. 他们不能再等了, Mathina now knew the lifesaving treatment her daughter needed was 5,000 miles away 在 hands of a U of U Health 神经surgeon. 他们需要来找他.
“大发娱乐真的别无选择，”马蒂娜说. “救伊迪丝的命高于一切."
The family would have to navigate not one but two national health care systems while juggling Edith's illness, 金融不确定性带来的压力, 而且几乎每一步都是全球性的流行病. 尽管这绝非易事, 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,卡尔写道。, 伊迪丝的爸爸, 在 家庭的博客 他们用来记录他们的旅程. “现在大发娱乐到了... It feels unreal, scary, but absolutely necessary and right."
5月, 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. 而伊迪丝需要不止一轮才能 RNS技术 可以生效.
"Epilepsy deprives you of much of your life because seizures are unpredictable and can appear without warning," Dr. 豌豆粉油煎饼说. “你不能相信你的大脑. 但是大脑是一个学习的器官."
The RNS设备 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, 但是对于大脑来说. 和人一样，癫痫发作的模式是独一无二的. Bollo's team needed to learn everything they could about Edith's brain. 所以他们做了手术 脑电图(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设备于是，她在小学的团队开始向前迈进. 在六月一个阳光明媚的早晨, 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. 对她的父母来说，“她只是在另一个方面与众不同."
当玛蒂娜和卡尔第一次听到卡尔医生的声音时. 两年前博洛的声音, they had no idea he would one day become Edith's 神经surgeon, 但他已经成为了这个家庭的一部分. All three share the hope that Edith's story will inspire change; and since day one, 来自世界各地的陌生人为他们加油.
伊迪丝的治疗仍在进行中, 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. 但在奥巴马博士的支持下. 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. 他们总能感受到阴影，但伊迪丝的 RNS设备 感觉像开了一盏灯.
Back home in Sweden, they are feeling anxious but hopeful.
"We feel very safe with the fantastic support we get from Dr. 博洛和他的团队...who have had the courage to stand by our side and not let us down," Mathina says. “大发娱乐相信这一切最终都是值得的."