The Brain Charity

Neil turns 40 this year and is a proud dad to three children: Lily, 11, Jack, 9, and a two-year-old toddler. 

But it was when Jack was just two years old that everything changed. 

A happy, curious toddler, Jack, suddenly began to experience repeated bouts of tonsillitis. Over the course of a single year, he had 11 infections, and his behaviour shifted dramatically. 

Neil, who lives with his wife Lucy and their children, said:  

“It happened almost overnight. Jack became obsessive, anxious, and aggressive. He started biting himself and having terrifying outbursts. We couldn’t leave the house.” 

Years of misdiagnosis and confusion 

The family spent years seeing specialists and seeking answers. But instead of support, they encountered a cycle of misdiagnosis. 

Neil said: 

“I felt totally helpless. We were watching our child go through something awful, and no one could tell us why.”

Everything changed when Lucy happened to see a segment on This Morning about a rare condition called PANS PANDAS. The symptoms described in the segment mirrored Jack’s almost exactly. 

That moment led them to a specialist—and finally, a diagnosis that made sense of PANDAS. 

Understanding PANS PANDAS 

Paediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections (PANDAS) are autoimmune conditions that cause the immune system to mistakenly attack healthy brain cells. 

They are often triggered by common infections—such as strep throat or even the flu. This faulty immune response leads to sudden and severe psychiatric and neurological symptoms, including: 

• Obsessive-compulsive behaviours 

• Anxiety and depression 

• Tics 

• Aggression and irritability 

• Developmental regression 

• Sensory and motor issues 

• Sleep disturbances 

• Changes in urination or eating patterns 

In PANDAS, specifically, these symptoms follow a streptococcal infection. 

Since the diagnosis, Jack has responded well to treatment—but it’s an ongoing journey. His condition means he’s more susceptible to infections and needs higher doses of medication than most children to keep his symptoms under control. 

From helplessness to hope

Determined to do something meaningful in response to his son’s battle, Neil decided to return to what he knows best—swimming.

A lifelong competitive swimmer, Neil was once ranked second in Britain for the 1500m. He’s taken on open water challenges across the UK and Europe, including lakes in Swansea and Scotland. His greatest feat so far? A world-record 70km swim across Lake Geneva without a wetsuit—a staggering achievement completed in 22 hours and 9 minutes. 

Now, he’s setting out on an even greater challenge: to swim the ten “great Swiss lakes” over the next two years, culminating with a second swim across Lake Geneva. 

Swimming for change 

This challenge is about more than just endurance. Neil is using his swim to raise awareness and funds for three causes close to his heart: The Brain Charity, the PANS PANDAS charity, and hopefully if enough funds are raised a Swiss conservation organisation. 

Louise Holgate, Fundraising Lead at PANS PANDAS UK, said:  

“We’re so grateful to Neil for choosing to take on this monumental challenge for PANS PANDAS UK and The Brain Charity. As a steadfast supporter of our mission, Neil’s remarkable swim across Lake Geneva in under 24 hours last year was more than impressive; it shone as a beacon of hope. It elevated awareness of these conditions among the public and healthcare professionals, igniting those transformative “light bulb” moments for families. We can’t wait to follow Neil along this new incredible journey!” 

Neil said:  

“When Jack got sick, we had never heard of PANS PANDAS. It was only by pure chance we found that TV clip, and that saved us years of more suffering. If I can help even one family find answers sooner, then this is all worth it.”

He was introduced to The Brain Charity through the PANS PANDAS network and quickly found their work resonated.  

Neil said:  

“They get it. They’re helping people with invisible, misunderstood conditions and raising awareness about all kinds of Neurological conditions. That’s exactly what Jack has.”

Looking ahead

For Neil, this swim is about creating visibility—for Jack, for other children with neuroimmune disorders, and for families who often suffer in silence. 

Neil said: 

“This challenge gives me a way to take control and give something back. Jack’s story isn’t over—and I want the world to see what kids like him go through, and how much difference the right diagnosis and support can make.”