A Utah surgeon treats a Swedish girl with rare epilepsy, the First child from Europe to get a brain transplant.
Four years ago, Edith Mölstad was a perfectly healthy seven year old, who loved her friends and school. Suddenly she developed a very severe case of epilepsy.
In 2017 while Edith was at school her father got a call from the school that Edith was sick and had a fever. Her father thought nothing of it. He thought it was just a regular stomach bug.
For a couple of days, they said Edith had Flu-like symptoms and that they thought she was getting better. One day Edith decided to sleep in her mother’s room, when they got up in the morning the mother said Edith would not wake up.
Machina Mölstad, her mother yelled for her husband. When he came into the room he said Edith was covered in sweat, shaking, and had blood all around her mouth. She was now having Back-to-back seizures. She was also in a state of epileptics. Which means she would remain unconscious. Not knowing that she would not wake up for another month. Which she said during the interview to KSL.
That was just the starting point for us on this horrible journey father, Carl Mölstad said.
After years on this horrible journey, a team of surgeons at Primary Children’s hospital created an implant to go into Ediths brain to hopefully help prevent the seizures. She then became the first child in Europe and Sweden to receive this kind of surgery.
Over the next few weeks, she’d been unconscious, and was at an Intensive Care Unit in South Sweden. Was diagnosed with an extremely rare form of epilepsy called febrile infection-related epilepsy syndrome or FIRES. They say this disease comes most commonly from school-aged kids who are healthy and then get a minor infection, followed by seizures.
Then, Edith was not responding to the medicine well and her fever would not break. The doctors also couldn’t make the seizures stop.
Her father then said, “A couple of times we almost lost her.” Which he said in the interview.
After a couple of days, she was able to get back some conciseness. Though she still was having seizures that would knock her down, mood and well-being. Her family said that they tried “everything they could”. Such as Injections, diets, and medicine.
In June 2021, Edith was able to get the surgery and she was the first child from Europe and Sweden.
The Molstads minus the youngest child, now wear black shirts to the interviews saying I am a FIRES fighter.
Edith will have to travel back to Utah every 2-3 months to get the device adjusted, for about 2 years.
So far her family has not seen much improvement. Edith still spends most of her time on the couch with her iPad, watching the other children play through the window. But now her family sits with the hope that this treatment will give her the ability to live, not just survive.
They don’t know the final cost but so far they have paid $100,000.
Just after the mother, Machina Molstad decided to do her research herself and buried herself in Medical Literature.
“You see your daughter is suffering badly and slipping away each day. It’s an enormous feeling of powerlessness. It’s just too horrible to accept.”Said Edith’s doctor which they added in the interview.
Carl Molstad then started a blog to document this experience, and hopefully raise funds for his daughter’s treatment.
But he found that talking about all the parts of having or helping someone that has epilepsy and writing out all that they had been through really helped him process it all. They have managed to collect 2,000 euros in funding through GoFundMe and connect with other families who have similar experiences.
I got this information off of KSL.com, I also got the article off of KSL.
