What Neil did next…
For a few years now, we’ve been following one of our most intrepid fundraisers and supporters, Neil Gilson. Already a record-breaking marathon swimmer, Neil continues to battle the waves to raise awareness of PANS and PANDAS.
Neil’s latest challenge involves crossing the ten largest Swiss lakes to raise money for PANS PANDAS UK and The Brain Charity, sharing raised funds evenly between the charities that have supported him and his son through their PANDAS journey.
This September, Neil is about to face the third stretch of water, Lake Neuchatel; that’s 32km of chilly freshwater. Swiftly followed by crossing Lake Biel, 15km – a mere puddle in comparison!
So far, Neil has raised more than £2600, can you help him to ‘just keep swimming’?
The Lakes:
- Lugano – 30km Completed
- Constance – 62km Completed
- Neuchatel – 37km
- Biel – 15km
- Maggiore – 54km
- Zug – 12.7km
- Lucerne – 34km
- Zurich – 36.2km
- Thun – 16.6km
- Leman – 72km
Spreading the word
When he’s back on solid ground, Neil is passionate about spreading awareness of PANS and PANDAS with local and national media.
Speaking with DevonLive and The Guardian, Neil says:
“[Swimming the lakes] is a huge mental and physical challenge, but I’m determined to complete it to raise awareness of the condition that changed my son’s life because it is far too often misdiagnosed or overlooked.”
Neil recently gave an in-depth interview to BBC Radio Devon. Skip to 1:.10 to hear Neil and Jack’s story.
Neil’s inspiration
Neil’s family have first-hand experience of PANS. His son, Jack, experienced a sudden onset of dramatic behaviour changes following a bout of tonsillitis.
“At 18 months old, he went to bed a happy, healthy little boy and woke up someone we didn’t recognise. Jack developed aggression, OCD, a tic, refused to eat and became scared even to leave the house.”
Like many parents, Neil was unable to understand what was happening and struggled to find the information or advice he and his family so desperately needed. Jack was continuously misdiagnosed, leaving his father feeling helpless and terrified. Neil explains more on his givewheel page:
“The scariest part was that nobody could offer a diagnosis or help bring Jack back to us. We spent years visiting doctors and searching for help, whilst his symptoms became progressively worse. We finally came across a family sharing their own story of PANDAS [on TV]. We found the doctor who had helped their son, and within weeks of treatment, Jack’s symptoms had dramatically improved.
Neil is aware of the struggle many families face when trying to find medical professionals who understand the conditions, despite the NHS recognition, international guidelines, and the fact that UK guidelines are in development.
[…] Because of this, I want to share our story and complete this swim so hopefully it can help other families who are desperate to find a diagnosis for their children.”
Neil has done so much for PANS PANDAS UK already, previously conquering Lake Geneva in a record-breaking 22 hours as part of our ‘Choose your Challenge’ campaign. Dramatically, Neil’s first swim in Lake Geneva was cut short when he developed hypothermia after a drastic fall in water temperature.
While this might put most of us off, the event only made Neil more determined. He returned the following year to smash the world record, previously held for 38 years, and now he is set to do something even more spectacular.
