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Swedish family travels to Utah for innovative brain implant


SALT LAKE CITY, Utah (ABC4) – An 11-year-old girl travels to Utah to become the first European child to receive innovative brain implant treatment for epilepsy.

The young girl, Edith, was deprived of her childhood due to a lifelong struggle with severe seizures. Her family say Edith has been ill for over four years now, and almost lost her life at one point due to an uncontrolled seizure.

Her family first noticed the disease when Edith was 7 years old. She came home from school one day feeling very ill with a high fever, excessive loss of energy and flu-like symptoms. The situation worsened when she was found shaking uncontrollably with blood in her mouth, unable to wake up.

Edith spent a month in a Swedish intensive care unit completely sedated, with doctors unable to control her tremors and raging fever. Her family believed she would not make it out alive. Fortunately, Edith was able to wake up, but her life has been radically changed since this first epileptic episode.

Her family were desperate to find a solution and discovered a tunnel of light while listening to a podcast.
They overheard a conversation about an innovative pacemaker with Dr. Robert Bollo, surgical director of the Pediatric Epilepsy Program at Primary Children’s Hospital in Salt Lake City.

The invention, called the NeuroPace RNS, is an epilepsy device that offers personalized treatment by responding to abnormal brain activity. The device is FDA approved, but was not available in Sweden, so Edith’s family flew to Utah, in hopes that the innovative implant device could finally bring their lives back to life. girl.

“She doesn’t really have a life right now and that’s what we’re fighting to give her. But whatever crises do to him is even worse. She can’t ride a bike, play with her friends, as soon as we try to do something she has horrible seizures and they knock her out and affect her cognition, mood and well-being … so she doesn’t never smells good, ”Carl says Molstad Edith’s father.

Edith was able to surgically implant the device in June and doctors are still monitoring her reaction to the procedure. She is scheduled for an update visit in December. The pacemaker’s journey is not instantaneous, they say, and only time will tell if Edith can finally stop struggling and enjoy her childhood again.

About 30 NeuroPace RNS devices have been implanted in Utah, with the battery requiring replacement after eight years. Edith’s family doesn’t know what the future holds or if Edith will need this device for the rest of her life, but they hope surgery will be the answer to all their prayers.


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Mary Cashion

The author Mary Cashion