Story
On Sat 13 & Sun 14 June 2026 my dad, Simon Collyer-Bristow, and I, will be walking the 100K Cotswold Way Ultra Challenge.
We have chosen to fundraise for two charities that are very close to our hearts. Cancer Research (link to JustGiving page at bottom of this story) and FND Action.
As some of you will know my husband, Kyle, was diagnosed with Functional Neurological Disorder 5 years ago. FND is a neurological condition that affects how the brain and nervous system work.
FND has massively impacted family life - Kyle had to leave his career in primary teaching and is no longer able to drive. He has daily non-epileptic seizures (often multiple seizures per day, that last anywhere between 5mins-2 hours in length causing temporary paralysis and extreme levels of pain), functional tics, affected gait and brain fog, plus the frustration and low mood that comes from having less independence and fear of whether things may never improve or potentially worsen in future. Some days are better than others, and remarkably Kyle is still working unlike many others with living with FND. FND is something that has co-habited with us for as long as Rona and Raasay can remember and has meant that our eldest, Isla, has had to take on young carer responsibilities from a young age. Continuing in my career as a Casting Director, has only really been possible through the generous support given by family, friends and members of our church congregation in order to meet the increased logistics that need to be considered by my being away from home.
Despite FND diagnosis being equal to that of MS there is currently no clear care pathway available on the NHS and no medication that is able to be prescribed to alleviate or eradicate symptoms. It is much more common than people think yet Kyle has felt incredibly alone in knowing how best to live life with this disorder. Continued research and general awareness (even within the medical world) is paramount to this disorder being properly catered for.
10 years ago Kyle ran the London Marathon but nowadays everyday things are often impossible to achieve without creating an FND stress response like family meals, helping to put non compliant tired children to bed, long car journeys or over stimulating social events without resulting in a seizure. Therefore I am taking on this ultra challenge for individuals like him living with this chronic disorder for whom each and every day feels like an endurance challenge.
FND Action specifically supports those who have received diagnosis. Please give as generously as you feel able to (and don’t forget to add gift aid if you can).
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.
Our Cancer Research fundraising link is here should you prefer to make your donation there instead https://www.justgiving.com/page/ellie-mcphail-collyer-bristow-2?utm_medium=FA&utm_source=CL