A father, a diagnosis, and the search for answers

Endurance swimmer Neil Gilson is used to testing the limits of his body off the rugged coastline of Ilfracombe in Devon, UK, where he lives. Swimming long distances in cold water with no margin for error, he has pushed himself further than most would think possible.

But the greatest test of his life didn’t happen out at sea. It began at home when his son had a sudden illness, leaving Neil and his family to navigate care and the complex diagnosis of a condition still not fully understood.

When everything changed

When Neil’s son Jack suddenly became unwell, everything changed. What started as a rapid and alarming change in behaviour – with moments of anxiety, obsessive thoughts, and emotional upheaval – led Neil and his family to search for answers in a system that did not always provide them.

Jack was eventually diagnosed with paediatric autoimmune neuropsychiatric disorder associated with streptococcal infections (PANDAS), a condition linked to a broader group of conditions known as paediatric acute-onset neuropsychiatric syndrome (PANS). These are complex disorders marked by the sudden onset of severe neuropsychiatric symptoms, including obsessive-compulsive behaviours, anxiety, and a decline in everyday functioning.

Awareness of PANS and PANDAS is growing, but our understanding of them remains incomplete. Researchers continue to explore their underlying causes, including the possible role of the immune system in some patients. As that work progresses, approaches to diagnosis and care are slowly becoming more defined, though they can vary significantly depending on location.

For many families affected by these conditions, the journey remains uncertain.

Stories such as that of Neil and his son Jack highlight the challenges faced by families living with complex and often poorly understood conditions. Supporting scientific understanding and raising awareness of these diseases remains an important part of Octapharma's commitment to patients and their communities.

Turning experience into action

For Neil, the turning point came not from the diagnosis, but from connecting with other parents. “We heard another family talking about their son and his condition, and the support that gave us is the reason Jack is as well as he is today,” he says.

It was a moment of recognition – and the start of a growing sense of wider responsibility.

Determined that others should not face the same isolation he and his family had felt, Neil decided to act. Drawing on the resilience he had built as an endurance swimmer, he set his sights on a new challenge: completing the Legend of the Lakes. Spanning Switzerland’s largest lakes, this gruelling, fully self-funded endeavour would test the limits of his physical and mental endurance. If completed, it would place him among a select few – and potentially make him the first person ever to achieve the feat.

But records are not the point.

“I’m not an athlete,” he says. “I’m just a dad who wants to help other people in the same position as us.”

Neil hopes each mile he swims will raise awareness, encourage understanding, and make the path a little clearer for other families facing the same condition.

And through a long-term documentary project, Neil hopes to capture not only the physical journey across Switzerland’s lakes, but also the realities faced by families affected by PANS/PANDAS. By sharing these stories, he hopes to create a legacy of awareness, education, and understanding that will continue to support patients, families, and healthcare professionals long after the swim is complete.

Those who know him see more than determination. “To turn something so difficult into something positive, it says everything about who he is,” one supporter reflects.

Neil’s story is not just about endurance. It’s about what happens when uncertainty meets resolve. When personal struggle becomes public purpose. And about how a father decided that, whatever the odds, he would keep going – not just for Jack and his own family, but for the other families still searching for answers.