Louis, Jude and Jonah are running the Mini Great North Run (for the second time :) in September in memory of Peter Charlton (Louis' Grandad), who was a Locked in Syndrome sufferer

A bit of background from Madeleine:

Stroke has affected various members of my family, the cases have all been different. For people who don’t know much about it, a stroke is a brain attack. It happens when the blood supply to part of your brain is cut off. Blood carries essential nutrients and oxygen to your brain and without blood your brain cells can be damaged or die. Symptoms of a stroke may include an inability to move or feel on one side of the body, problems understanding or speaking, feeling like the world is spinning, or loss of vision to one side among others.

This was my basic understanding until in 2007 when a horrendous ‘stroke’ left my dad with the worst possible type called ‘locked in syndrome’. To put it lightly it’s like having the worst ever nightmare that you don’t wake up from and frankly I wouldn’t wish it on my worst enemy.

Locked-in syndrome is a rare neurological disorder and results from a stroke that damages part of the brain stem in which there is complete paralysis of all voluntary muscles except for the ones that control the movements of the eyes.

To put it simply your brain functions 100% but you cannot walk, talk, drink, eat or have any facial expression. My dad was still sane and had his mind but couldn’t communicate with us, apart from using his eyes and a plastic board adorned with letters and colours where by eye movement would determine the letters of the words he wanted to speak. A painful and slow process to be able ‘talk’ to us.

Until 2007 my dad was a 58 year old healthy, active, successful and happy man…who enjoyed travelling, socialising and working as a successful Chartered Surveyor. His business had to close over night.

It is true that one night can really change your life. Seeing your loved ones suffer is so tough and those of you who have experienced similar can understand that you grieve the loss of a parent even though they are still present. I hated seeing my dad like this. 6 months later he was meant to be ‘walking’ me down the aisle. He never made it to my wedding due to being in hospital and he never walked again.

For me he was an inspiration as he never ever complained when I went to see him, he would spell out the odd frustrated swear word and I would openly ask him if he wished he was dead…his response was always ‘no’, he learnt to accept this condition and valued being alive even in such an awful painful place.

He maintained this sense of humour the whole way through his illness and we would laugh together, his humour mainly coming from slagging off Newcastle United and would love a Derby game when the Mackems would beat the Mags (sorry Newcastle fans). It’s fair to say this year would have been his boasting year in terms of North East football. He also loved cricket and was a keen spectator and committed season ticket holder at Durham, a sport he used to coach as well as being chairman of a rugby club.

He lived like this for 6 years until he died one night (peacefully I hope) in his sleep. He wasn't ready to go and had in fact just been to a stadium tour at the Stadium of Light a few weeks prior. As it approaches the 3 year anniversary since he died, and even more poignant that the boys will be running the mini run on the actual anniversary date I thought it would be lovely, especially for my son Louis running for his late Grandad ("Grandad Charlton in heaven" - his words) to run the race in his memory and raise money for the Stroke Association to hopefully fund more research to prevent ‘locked in syndrome’.

Thank you for reading my short story and if you are able to donate it is much appreciated.

Madeleine xx