It’s actually been far more challenging to get the words written for this page than the marathon training itself so far but, I need to raise some cash for this amazing cause so here goes…

This April the 21st we will be running the 26.2 mile course of the London Marathon for the PSP association, raising money for a cause very close to our hearts and all those that know our wonderful Mum/Mother in Law Fiona Jeckells. Running for a cause dedicated to a disease we did not know existed less than 6 months ago and that now forms an enormous part of our family’s lives. A disease that is slowly taking something so utterly precious to us all.

For anyone who isn’t familiar with Fiona and her story, Fiona was finally diagnosed with Progressive Supranuclear Palsy in December of 2023 after an almost 5 year long battle with declining health and a frustrating lack of medical insight as to why. To say it’s difficulty to diagnose is one of the cruelest parts of this disease is an under statement - watching it wreak havoc on a person you love, while it lurks in the shadow’s robbing you of any reason why, is truly heartbreaking. For years we endured endless confusion from health professionals - ‘it’s depression’, ‘no, actually it’s anxiety’, ‘or maybe its dementia’, ‘in fact its Parkinson’s’, ‘oh no wait it’s not, it’s something else’ and now we are left not only with the horrible reality of PSP, but also wondering how different things might have been for Fiona and us, if we could have had this knowledge sooner. On a recent visit to Cambridge University hospital, one of the Neurologist’s stated that a GP would be likely to see only one case of PSP in their entire career!

PSP is a rare neurological disorder that results in the death of brain cells in the frontotemporal lobe of the brain - the part of the brain that makes each one of us who we are and dictates how we function from day to day. This disease has robbed Fi of every single thing that made her who she was - her vision, her balance, her independence, more recently her ability to eat normally and swallow without choking. Once such a proud woman the indignity she suffers on a daily basis is palpable. PSPA is the only UK charity dedicated to improving the lives of people living with Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD), a very similar disease that they also support. They provide information and support for people affected by PSP & CBD whilst funding research into the causes, treatment, and eventually a cure. Their hope is that together we can stop PSP & CBD in their tracks. If fundraising for this charity means even one family does not have to endure the agony we have then 26.2 miles will be worth it. Anyone that knew Fiona, knows what a truly infectious, vibrant energy and unique soul this disease has taken from us all.

Obviously, per above, when the Marathon applications opened up last April, we did not even know PSPA existed let alone think of entering a marathon to run with them! Hannah very wisely put us on the wait list before Christmas and we were lucky enough to be given last minute places. It might not be as easy without as much training under our belts as we would like but, 26.2 miles is nothing compared to the struggle that people with PSP & CBD face with their loved ones every single day from the moment they wake up until the moment they go sleep.

Each and every step of the way the vision of her beautiful face will get us through…

Mum, We’ll be right here!