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Primary Children’s Hospital implants brain pacemaker in Europe’s first adolescent patient

SALT LAKE CITY — Imagine having to fly thousands of miles to a different country, through COVID-19 travel restrictions, for your child’s life saving surgery.

That’s the reality for the Molstad family from Sweden.

Edith Molstad makes her way to Utah every three months for treatment not yet available in her homeland.

The 10-year-old suffers from a debilitating disease called “FIRES,” or febrile infection-related epilepsy syndrome.

Her family said the condition has taken so much from their young daughter.

“She can’t ride a bike, she can’t 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 well-being, so she never feels well,” said Mathina Molstad, Edith’s mother.

Treatment for the rare disease in children is not something doctors in Sweden were really familiar with.

“We had tried basically everything that the Swedish healthcare has to offer,” said Molstad. “We have tried a special diet, a lot of medicine, many different kinds of medicines and injections.”

Her parents started to look for answers all over the world, and through that research, they came across a treatment option at Primary Children’s Hospital in Salt Lake City. 

Edith’s mother sent a handwritten letter to Dr. Robert Bollo, a neurosurgeon and surgical director of the pediatric epilepsy surgery program at Primary Children’s Hospital, and was touched by his response.

“That letter that was written, he was using his heart and his brain,” said Molstad.

Dr. Bollo and his team reviewed Edith’s case and determined she was a candidate for “RNS” or “Responsive Neurostimulation“ surgery, implanting a pacemaker in her brain.

“It can monitor when a seizure is starting and try to just stop it before it starts,” said Bollo.

In June, Edith had three successful surgeries and is now on the road to improvement.

She has become the first child in Europe to have the pacemaker implanted. 

“We just always want to do everything we can to make her as much of a normal child and to live a fulfilling and wonderful life as we can,” said Bollo.

Edith will need to fly back to Utah every three months for appointments.

Her family has already paid nearly $100,000 out-of-pocket for trips and treatment, since their Swedish healthcare will not cover the cost. 

“It’s about saving your daughter’s life, so you do what you have to,” said Molstad.

The family has set up a GoFundMe* campaign to help cover the cost of medical expenses.

*KSL-TV does not assure that the money deposited to the account will be applied for the benefit of the persons named as beneficiaries. If you are considering a deposit to the account, you should consult your own advisors and otherwise proceed at your own risk.

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