SALT LAKE CITY, Utah (ABC4) – An 11-year-old girl travels to Utah to become the first European child to receive an innovative brain implant treatment for epilepsy.
The young girl, Edith, has been robbed of her childhood due to an ongoing struggle with severe epileptic seizures. Her family says Edith has been sick for over four years now, at one point almost losing her life to an uncontrolled seizure.
Her family first noticed the illness when Edith was 7-years-old. She arrived home from school one day feeling very sick with a high fever, excessive loss of energy, and flu-like symptoms. The situation grew worse when she was found shaking uncontrollably with blood in her mouth, unable to wake up.
Edith spent a month in a Swedish ICU unit completely sedated, with doctors unable to control her shaking and raging fever. Her family believed she wouldn’t make it out alive. Luckily, Edith was able to wake up, but her life has been drastically altered since that first epileptic episode.
Her family was desperate for a solution and discovered a tunnel of light while listening to a podcast.
They heard a conversation about an innovative pacemaker device 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 delivers personalized treatment by responding to abnormal brain activity. The device is FDA approved, but wasn’t available in Sweden, so Edith’s family flew to Utah, hoping the innovative implant device can finally give their daughter her life back.
“She doesn’t really have a life at the moment and that’s what we’re fighting to give her. But everything the seizures are doing to her are even worse. She can’t ride a bike, play with her friends, as soon as we try to do something she gets horrible seizures and they knock her out and they affect her cognition and her mood and her wellbeing…so she never feels well,” Carl Molstad Edith’s father said.
Edith was able to implant the device via surgery back in June and doctors are still monitoring her reaction to the procedure. She is scheduled for an update visit in December. The pacemaker journey is not instant, they say and only time will tell whether Edith can finally stop struggling and enjoy her childhood once again.
About 30 NeuroPace RNS devices have been implanted in Utah, with the battery needing replacement after eight years. Edith’s family doesn’t know what the future holds or whether Edith may need this device for the rest of her life, but they’re hopeful the surgery will be the answer to all their prayers.