SALT LAKE CITY — A family from Sweden believes health care provided in Utah can save their child’s life.
10-year-old Edith Molstad suffers from ‘FIRES’ or Febrile Infection-Related Epilepsy Syndrome.
It’s a rare neurological disorder that impacts roughly 1 in 1,000,000 children, according to the Epilepsy Foundation.
“I saw my daughter all covered with sweat, shaking. She had blood all around her mouth,” said Carl Molstad, Edith’s father.
The girl spent weeks in intensive care in Sweden after she began experiencing symptoms four years ago. She has suffered from seizures and fatigue ever since.
“The Swedish healthcare system has a different approach,” Carl said. “It’s more 'wait-and-see.' Maybe she will get better.”
Edith’s family knew they didn’t have time to wait because this disorder can be fatal.
“You see your daughter suffering really bad and you see her slipping away each day,” said her mother, Mathina Molstad. “It's an enormous feeling of powerlessness.”
Mathina spent hours doing research and learned of a treatment in the United States. She sent letters to several doctors but was most impressed by a response she received from Dr. Robert Bollo from Intermountain Primary Children’s Hospital.
“That letter was written -- he was using both his heart and his brain,” Mathina said.
The treatment involves a small computer that is implanted in a patient’s skull and connected to the brain. It is only available in the United States.
The family says the socialized healthcare system in Sweden declined to pay for the procedure.
So far, the Molstad family estimates they have spent $100,000 out-of-pocket.
They also must travel from Sweden to Utah every three months to recalibrate the device.
Results are not instantaneous.
“We see some kids have a response right away, and we see others take a longer time,” Dr. Bollo said.
Dr. Bollo hopes the device helps improve Edith’s quality of life as soon as possible.
Now, she is waiting -- hoping this breakthrough technology fights off this cruel disorder that has robbed her of four years of her childhood.
“It’s like a marathon,” Mathina said. “We have to be patient.”
The family has a GoFundMe to help with medical expenses.