Whenever world champion swimmer Neil Gilson tires, as he pushes his body to its limit, he thinks of his 10-year-old son, Jack. Dubbed ‘The Legend of the Lakes,’ father-of-three Neil is mid-way through a Guinness World Record-breaking challenge to swim the 10 largest lakes in Switzerland.
Last month, he completed number five, a 61km swim of Lake Maggiore, setting a new world record of 17 hours 14 minutes. He says: “Every stroke I take, I do it for my son. Every time I want to throw in the towel, I picture him on the shore at the end, saying, ‘Daddy, you did it!’”
Neil, who runs the Sandy Cove hotel in Berrynarbor, North Devon, with his wife Lucie, will never forget their boy’s alarming change in behaviour, aged 18 months. Dad to Lily, 12, Jack and Ruby, four, he says: “Almost overnight Jack developed severe anxiety and became really nervous about everything. He had a bad tic, where he would rub his ear on his shoulder. It became constant.
“He barely ate anything and had extreme tantrums. Often, he would stare into nothing and then start screaming. Then he started biting his arm, which was terrible. He was actively hurting himself. We got to a stage when we couldn’t get him dressed. As parents, we were frantic with worry.”
Initially thought to have autism, then Tourettes, Neil recalls him being tested for inner ear issues and allergies, to no avail. He says: “Jack had tonsillitis 11 times in one year. Everyone was baffled as to why it kept coming back.”
It wasn’t until Jack was three and Lucie stumbled across a viral social media video, that the family finally got answers. Neil says of the clip: “It was from ITV’s This Morning, and there was a family on there with a doctor talking about their son. The headline was something like ‘mould turned my son evil’. I obviously don’t like the word evil, but at the time – we could relate.”
A light bulb moment, the couple tracked down the doctor from the show, Dr Tim Ubhi, from the London PANS Clinic and made Jack an appointment. Blood tests confirmed he had the streptococcus bacteria in his system. Neil says: “He was having a misdirected immune response to the illness, which his body was unable to clear.”
Jack was diagnosed with PANDAS (peadiatric autoimmune neuropsychiatric disorders associated with streptococcal infections) – debilitating conditions in children that trigger sudden, severe neuropsychiatric symptoms, like obsessive compulsive disorder (OCD) or tics.
It usually follows an infection, like strep throat or scarlet fever and causes the body’s immune system to mistakenly attack the brain. The resulting inflammation triggers abrupt behavioural and neurological changes.
Given a longer course of antibiotics to wipe out any infection, Jack then had his tonsils removed. Neil says: “We started to get our little boy back. It was incredibly emotional. We haven’t looked back.” Winter bugs, especially, still cause flare-ups, but Jack now understands what’s happening, so can tell his parents, who then take appropriate action.
Keen to raise money for PANS PANDAS UK, charity, which supports the 7,100 UK families dealing with the conditions, Neil – who in 2002 British Championships came second in Britain in the 1,500m freestyle – sprang into action.
He says: “I felt powerless, so did what I could – swim. I did my first challenge, a 24 hour swim for PANS/PANDAS UK charity in a Scottish lake, in June 2020; then I did the Bristol Channel in July 2021, then Lake Geneva in July 2023 (first attempt) and 2024 (second successful attempt).”
An ambassador for PANS PANDAS UK, he continues: “There are people that are desperately searching for answers, just like we were. My mission is to try and get the information in front of their noses.” And one day, he hopes to make a documentary, adding: “If the people on This Morning hadn’t done that, I don’t know where Jack would be now. Early diagnosis is key. The sooner you can treat it, the better.”
Neil swam four Swiss lakes last year – Lugano (30.7km), Constance (65km), Biel (15.7km) and Neuchantel (37.4km) – achieving new world records for all of them. Next week he will fly back to Switzerland to take on Zurich (37km) and Zug (13.8km), then Lucerne (36.2km) and Thun (16.6km).
His epic challenge will conclude in August, with Lake Geneva. And the whole challenge is being recognised by Guinness World Records, with Neil being the first person to swim the 10 largest Swiss lakes.
Explaining the rules, he says: “Non-stop swimming. I’m not allowed to touch the boat. No one is allowed to touch me. I’m not allowed any monitors or pacing equipment. It’s just a swim hat, goggles, trunks – that’s it. Every hour I stop for food, a little bite of something, and a drink. For the rest of it, I just try to relax.
“I try not to think about time. It can be a mental battle, you have to train your mind more than your body with a marathon swim. I try to meditate, I look at the bubbles on my hands. The boat is always on my right, so I see boat, water, boat, water, boat… and so on.”
Training in the pool and the sea near his home, Neil does regular yoga, too, to train his mind. He says: “When I was swimming Lake Maggiore, with 7km to go, I had nothing left in the tank. I was absolutely exhausted. Then I pictured Jack’s face. It gave me the strength to carry on. In my 20s, I wouldn’t have been able to do it, not physically, but mentally.”
Thinking of Jack, he says, gives him a ‘superpower.’ He adds: “Jack is my why.” And, Jack will join him for the last section of his 72km Lake Geneva challenge. He says: “We’ll reach the shore together. Me and Jack. I’m so incredibly proud of him, and how far he’s come. It’s going to be so special.’
The Mirror’s Save Lives For Sam campaign
Neil is throwing his support behind the Mirror’s Save Lives For Sam campaign
He says: “I back the Mirror’s Save Lives For Sam campaign 100%. During my first attempt to swim Lake Geneva, in July 2023, I experienced severe hypothermia.
“Around 18 hours into the swim, the water temperature suddenly dropped by around 7°C. By that stage, my body was already extremely fatigued and simply couldn’t cope with the rapid change in temperature.
“I lost consciousness in the water and had to be rescued by my support team, who brought me onto the boat and managed to revive me. It was a stark reminder that even with years of experience, open water can change in an instant and must always be respected.
“I was incredibly fortunate to have an experienced safety team with me that day. Their training and quick actions undoubtedly saved my life. That’s why I always say no swim or challenge is ever worth taking unnecessary risks for.”
Before every swim Neil and his team assess the water temperature, weather, wind, currents and the conditions across the route. He says: “I only swim when they advise that it is safe to do so.
“Never underestimate open water. Even on a hot day, the water can be dangerously cold and conditions can change very quickly. Always swim with others, choose a safe location, and never take unnecessary risks.
“I’ve spent years swimming in open water, and one thing I’ve learned is that it doesn’t matter how experienced you are – you should never take risks. If conditions aren’t right, the swim can always wait.”
*For more information and to donate, see panspandasuk.org; for more information about Neil, see HERE
