By Dan Coles
This dad swam 24 miles in 24 hours to raise awareness for an almost undiagnosable condition that his son was diagnosed with after watching a TV show.
Father-of-two, Neil Gilson, 33, a hotel manager from Ilfracombe, North Devon, describes his son as becoming “possessed” overnight by a condition that several doctors and child health professionals could not diagnose his son with after a year’ worth of doctors’ appointments.
He was watching a television show whilst on holiday and saw a child on the show displaying the exact same symptoms as his son Jack was suffering from – which lead to an official diagnosis of PANS/PANDAS syndrome by their doctor, saving his son from permanent and lifelong damage.
Neil credits the exposure being the reason his son is now cured and living a full life, so has now swam a 24-mile Loch Lubnaig in the Cairngorms National Park, Scotland in as many hours to raise money and awareness for the condition that nearly changed their family’s life forever.
Neil said: “My sons went to bed one night, and woke up a completely different person, he wasn’t the same boy that fell asleep the night before.
“Pandas, the condition he had, if not diagnosed can cause permanent cognitive damage if it is not caught early, my son suffered uncontrollable bouts of severe aggression which saw him attack us, have burning skin and a severe tic – as well as his fingernails and toenails completely falling off.”
“If I had not of seen the interview on television at the time, we would have carried on thinking it was just another streptococcal infection, which he had 10 times before the correct diagnosis.
“That interview saved our sons life so since then my mission has been to get as much information out as possible.
“I’ve always done a bit of swimming, so I knew I could get it done and I need to try and help as many other families as I can because we got our son back when we knew what he was suffering from.
“I was only allowed a break in the swim if I swam a mile in under an hour, whatever was left over was time to nap, rest and eat.
“The thing that got me was the cold, it was so difficult to get warm and psychologically to think of what I had to do was a real battle.
“I started at 9am and finished at 9am the next day, at one point we nearly had to call it off as I was on the brink of hypothermia.
“We had to take it seriously after that point, it was freezing cold in the might, mile 17 was the hardest one of them all.”
The swim took place on the on June 22, 2019 and has raised £6,000.
Neil said: “Everything raised will go to “PANS PANDAS UK” a charity that like me is exposure based and works to get the message out for a condition that without being known about can cause so many problems.”
Throughout the swim, Neil was guided by two-time Olympian world champion record holding British swimmer, and Neil’s sons godfather, Liam Tancock, as well as Joe Roebuck, European and commonwealth games champion.
Neil said: “I had a great team around me to get this done, which made it a lot of fun, I almost had to give up on mile 17 but remembering what
Jack had gone through and what I’m sure other parents and children are unknowingly going through kept me going.”
To donate to the cause see here: https://wonderful.org/fundraiser/24hourswim-73bf3666?fbclid=IwAR3OCyrjSBM5MyvHsV_K26UyN3WWNSC-CjBfOPAxNa6Sxhsmhh6jDbnnHj0