Morten’s first weeks as a father were nothing like he had expected.
At only five days old, his newborn son Mads was admitted to the neonatal unit at the hospital after a series of severe seizures. Within his first ten days of life, doctors had already performed an MRI and identified a damaged area in his brain. The seizures kept coming, sometimes 40 to 50 a day, setting the direction of a future most parents never have to consider.
Although born full-term and healthy in every other way, Mads remained in neonatal care and was started on antiepileptic medication while doctors worked to understand the cause of his seizures.
He was later referred to a specialized epilepsy center, where doctors diagnosed him with complex partial seizures. The severity meant they had to begin exploring more advanced treatment options.
“We tried a lot of different medications, but nothing really worked. At some point it was clear that without surgery, there was no real hope of seizure freedom,” Morten recalls.
With so many questions still unanswered, the focus shifted to simply trying to gain even the slightest control over the seizures.
Seeking Answers Abroad
Mads’ lead neurologist had come across a study detailing a specialized surgical approach developed at the Cleveland Clinic in the U.S., where a small group of children with similar profiles had seen promising results. This type of procedure wasn’t available for children like Mads in Denmark at the time, but the study suggested a potential path forward. After a thorough evaluation and with approval from the Danish Health Authority, Mads was referred abroad for surgery.
In 1997, Mads, his mother, and his father Morten traveled to the United States for the operation.
After returning home, Mads was seizure-free and began developing slowly. Though he had severe developmental delays, the family saw glimmers of progress.
“He started saying a few words and could walk a little on his own,” Morten says.
Mads remained on a triple-medication regimen before and after surgery. Eventually, the doctors began gradually tapering his medication, but the seizures returned.
“They didn’t come back with the same intensity, but they did come back,” Morten says.
“Mads was three or four at that point, and even though we tried many different medicines over the years, including new ones as they came along, he never became seizure-free again.”
Mads gradually lost the progress he had made, including his ability to walk independently, and the few words he had learned.
Daily Life and Care
For much of his life, Mads has lived alternately with his mother and father. His days followed a steady rhythm: help with dressing, watching TV, going for walks, or catching a football match. He attended a day program where he worked with assistive communication tools and joined a youth group focused on nature activities, even taking part in a trip to Crete.
“We’ve always tried to give Mads a life that fits where he is developmentally,” Morten says. “He has a strong network, and we’ve worked hard to give him a meaningful life within his limitations.”
Having the right support has been essential for Morten and his family. Early on, the municipality introduced them to another household raising a child with disabilities – a connection that became a lifeline during years when everything felt uncertain.
“It meant a lot,” he says. “That relationship went on for years and gave us a lot of strength. And I’ve also had close friends and a supportive partner who’ve been there in the hard times.”
His advice to other parents in a similar situation is clear: “I’d say: seek out communities, whether formal patient organizations or just other families going through something similar. You don’t have to be involved in everything. But being connected to others gives perspective, practical knowledge, and emotional support.”
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Today
Recently, Mads moved to a residential care facility for young adults with disabilities. It's a major transition, not just for him, but for the whole family.
He now lives among peers and is supported by professional caregivers who help him around the clock. For Morten, knowing that Mads is settling in and well looked after has brought a sense of relief.
“We visit him a lot,” Morten says. “They take really good care of him, and it’s clear he enjoys being around the people there.”
Now 29 years old, Mads’ development has largely plateaued. His life has been shaped by his epilepsy and all that comes with it, but behind the diagnosis is a cheerful, curious young man who lights up when there's energy around him.
Though Mads doesn’t speak, he uses communication tools to express simple needs and build short sentences. But his personality, Morten says, has always come through clearly.
“He’s very quick to laugh and smile,” Morten says. “He loves fun and play, and there’s a lot of life in his eyes and in the way he is. He likes being around other people and really thrives when things are happening around him.”
The Unspoken Weight
Mads still has between three and nine short seizures every night, and occasionally a longer one. These are exhausting and impact his overall energy and wellbeing. Fortunately, for most of the past 20 years, his seizures have occurred only during sleep, which has spared the family some of the worst injury risks.
“After nearly 30 years on this journey, I’d say his epilepsy is more or less stable now,” Morten says. “But his quality of life is still very affected.”
One of the biggest ongoing challenges for Morten is the uncertainty about the future:
“For many parents, the worries ease as their child grows up,” Morten says. “But for Mads, the bumps in the road are constant.”
There’s also the ever-present fear that one day, he might not survive a seizure. Among the more serious risks is SUDEP (Sudden Unexpected Death in Epilepsy) – a rare but real possibility for people with uncontrolled seizures.
“We don’t go around thinking about it every day,” Morten says. “But it’s always there in the background.”
Investing in Progress
Across nearly three decades, caring for Mads has meant more than navigating daily routines and medical decisions. It has also meant searching for ways to help shape a future where families like his have more options than the ones available when Mads was born.
That desire to act and to contribute to something larger than his own situation, is what ultimately led Morten to Neumirna’s work.
With a background in biotech and decades of lived experience, he recognized the potential in a field that had seen too little change for too long. The idea of treating epilepsy at its underlying mechanisms, rather than only controlling symptoms, felt like a meaningful step forward.
“I don’t have massive funds, but I chose to invest what I could,” Morten says. “I’m realistic. I know it may not help my own son, but it could change things for others in the future.”
For him, hope doesn’t mean expecting a cure for Mads. It means believing in progress: in research that keeps moving, and in possibilities that weren’t even imaginable when his son was a newborn in the neonatal unit.
