Devon father one step closer to completing world-first swim to raise awareness of son’s brain condition

A father from North Devon is set to complete the final six lakes in his bid to become the first person to swim Switzerland’s ten largest lakes after his young son was diagnosed with a rare brain-attacking condition PANDAS, that caused sudden onset aggression, OCD and tics overnight.

Neil Gilson, a 40-year-old dad of three from Ilfracombe, has already completed four lakes and will now take on lakes Maggiore (54km), Zug (13km), Lucerne (34km), Zurich (36.2km), Thun (16.6km) and Leman (72km) in the final stretch towards being the first person ever to complete the endurance swim covering 369 kilometres (almost 330 miles).

As part of this stage of the challenge, Neil will be completing four lakes in one month requiring him to tap into both his physical and mental training to reach his end goal.

“⁠Last year I did two lakes on consecutive days to make the most of the weather window,” says Neil.

“By the second day, everything hurt - I had to dig deep to just start. The water temperature started at 16 degrees for the first swim. It felt cold and I had to swim slightly quicker to raise my heart rate to warm up.

“I’m expecting similar temperatures for these last six lakes and doing four in one month is going to add to the challenge; however, I’ve had plenty of time to prepare both physically and mentally and knowing I’m doing this for both the charity and my little boy, Jack, helps me towards the finish line.”

Neil is working closely with the Guinness World Records team to verify the feat that he plans to complete in August and will see him dealing with unpredictable weather, extremely dangerous currents, the constant risk of hypothermia and exhaustion.

He said, “I can honestly say this has been the most difficult challenge I’ve ever undertaken, but I’m more determined than ever and have learnt a lot from the lakes I swam last year, two of which I managed to get world records for (Neuchâtel and Biel) so I’m ready to go.

“Jack is going to meet me as I cross the finish line in Leman, so I know I’ll swim particularly fast across that lake to meet him.”

Following his record-breaking swim across Lake Geneva in 2024, where he broke a 38-year-old world record while raising funds for PANS PANDAS UK in a separate challenge, the former international swimmer returned to the water in June 2025 to begin the ‘Legend of the Lakes.’

“My son Jack was just 18 months old when he caught tonsillitis, and our world changed overnight,” Neil explained.

“He went to bed a happy, healthy little boy, and woke up as someone we didn’t recognise- he was suddenly gripped by aggression, OCD, tics, and intense fear; he also refused to eat, wouldn’t leave the house or even speak, and eventually began losing his fingernails and toenails.

“For a year, we searched for answers while his condition worsened; it was terrifying that nobody could offer a diagnosis or explain what was happening. As a family, we were desperate, it was heartbreaking.”

It was only while watching ITV’s This Morning that Neil came across a segment in which a mother described her son’s symptoms which were shockingly like Jack’s.

“A doctor on the show spoke about a treatable condition called PANS/PANDAS, which prompted me to contact our own GP.

“He admitted he hadn’t heard of it, but agreed that many of Jack’s symptoms aligned,” said Neil.

Neil was later able to arrange an appointment with the same specialist featured on the programme, which led to Jack finally being diagnosed with PANDAS - Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections.

“Jack is now 10-years-old and thriving, so I’m sharing our story through this challenge to help other families still searching for answers,” Neil added.

“While Jack still lives with some effects of PANDAS, we’re managing them well - but his diagnosis truly saved his quality of life. Sadly, many others aren’t as fortunate and remain completely unaware of the condition, so I’m determined to change that.”

PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS are neuropsychiatric conditions that affect the brain.

PANS and PANDAS are also often associated with noticeable changes in mood, behaviour, and sensory and motor function in children including OCD, anxiety, tics, eating restrictions, emotional instability or depression, aggressive or oppositional behaviour, developmental regression or a sharp decline in school performance.

Children with PANS or PANDAS may present with a different combination of symptoms, and these symptoms may change over time.

Outdated controversy around PANS and PANDAS continues to hinder awareness, with 95% of parents reporting it was never mentioned by their GP, despite estimates that PANDAS affects 1 in 200 children.

Vicky Burford, Chief Executive Officer of PANS PANDAS UK, shared her thoughts, saying: “Neil’s endless drive and the progress he has already made towards this challenge are truly inspiring. Neil and his family understand first-hand how deeply PANS and PANDAS can affect day to day family life and that personal experience sits right at the heart of his challenge, which is evident in both his remarkable physical efforts and his dedication to fundraising.

“I cannot thank Neil and his family enough for their ongoing support and advocacy, which not only helps generate essential funds for our charity, but also brings vital awareness to these misunderstood yet devastating conditions.”

Neil is now in training in the pool and in the sea by his home and arranging logistics for the next six swims which start in June.

“It’s so important for me to let other parents going through what we did know that this is a treatable condition, and in many cases, treatment can be surprisingly straightforward,” Neil added.

“It’s more common than people realise, and I truly hope this swim helps improve the lives of others affected.”

He is raising money for PANS PANDAS UK. To support Neil's record-breaking challenge, visit https://givestar.io/gs/neil-gilsons-legend-of-the-lakes-for-panspandas-uk

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