So my life has sporadic moments of being like a work of an imaginative fiction writer and, now writing this, I feel like this is a chapter that even the likes of Tolkien, Rowling or Dahl could not have conceptualised.

I had a phone call in April from The Grand Appeal, a charity that supports the Bristol Children's Hospital, telling me they were choosing me to be their London Marathon runner this year. I always liked to enter the ballot for this race because the chances of getting in are slimmer than me being chosen to head out on the catwalk for Vivienne Westwood. I only said I’d ever run for a charity I felt truly entwined with.  Before I get onto what makes the charity important to me I need to throw out that I’m a sporadic runner but the word ‘consistent’ doesn’t feature. I’ve jogged on and off for twelve years and through periods of stress it’s been a saviour but I’d be a pathological liar if I said I enjoyed it! I tend to run alone, and those friends who have been ‘lucky’ enough to run with me will attest that I’m a tad overdramatic about whether or not I’ll make the end of the race. The pandemic wasn’t my friend in terms of running but I ate my way through the many lockdowns (which at the time was enjoyable) so I’m not at peak fitness and my fighting weight is more than I’d like so this truly will be a challenge for me and no mean feat. Training is going to be interesting over the next few months as we enter the cricket season (I coach youth and ladies cricket two nights a week and we have three matches a week over the summer, if not four or sometimes five) and so my plan involves simply going running when I have time. Therefore, if ever there was someone that needs your best wishes on their side when I head to the start line - it’s definitely me! 

My world revolves around my boys and back in 2016 we embarked on understanding why my eldest child was struggling with a cardiac type issue and in 2018 we discovered George had a rare genetic condition called Loeys-Dietz Syndrome - a connective tissue disorder that affects every part of the body. In 2019 just before his GCSEs we discovered he’d need open heart surgery to repair his aortic root valve before it got to a point where it would dissect. Soon after his exams he had successfully made his way through a 7 hour operation in Bristol with thanks to the brilliant team including his surgeon Professor Caputo. Recovery was hard, even for someone young and fit it was difficult and as a mum so hard to watch him have to go through so much pain, but emotionally after the surgery was a low point for him and we accessed the services at the hospital to help him come to terms with all he’d been through and his life moving forward. Not long after this my younger sons (twins) were genetically tested and one of them, Oscar, has the same condition as George. We are regular visitors to the hospital for scans, check ups and to see our wonderful consultant (Dr Armstrong). Having access to paediatric specialists in cardiology who understand and have researched Loeys-Dietz Syndrome is vital, by being scanned by radiographers that know what they’re looking for and are compassionate and caring is a blessing and that’s without even mentioning the cardiac nursing team who are kind and helpful. I feel that we are so lucky in the South West to have access to such a great hospital and all the staff within it that I want our story to help raise money to help others. Without access to the genetic testing, the paediatric MRI scanner or outstanding consultants and surgeons then our lives would be different. We are also grateful for the work the hospital in Bristol does with our local hospital in Taunton and the way all the specialists link up. All of my boys are individually brilliant but two of them have to work harder physically to be able to live a more ‘normal’ life - they’re tired from the medication they take, their bodies ache daily and they are always on high alert as to whether the pain they’re feeling is something they need to seek urgent medical advice for, like an aortic dissection, or a lesser issue. 

Our story isn’t a sad one - not yet anyway, my children are alive and thriving (within the limits of their condition and with a few bone breaks and dislocations that also form part of this lovely syndrome) but that’s only because they are well looked after and have been taken care of by the hospital for a number of years. We have turned thinking about their conditions from a death sentence to a life sentence - and in order for them to live the best life we make memories, we travel, we play sports, we try to live a happy life but above all they keep getting up when the going is tough and I’m in awe of my boys for doing this every day but I’m also utterly grateful to the medical teams looking after their complex condition. 

We are absolutely blessed as a family to have the best family, the most kindest, caring and reliable friends and I work for an amazing organisation with the Bridgwater and Taunton College Trust, and previously Brymore Academy. I have never not been allowed time off to take my children to hospital appointments or to sit through a whole week of being in Bristol while George had his operation so the support from my employers has been second to none and going forward I'm safe in the knowledge they will be as supportive of my marathon fundraising too. As a family we have always been buoyed by the community around us and the support from the local cricket (Staplegrove and Taunton CC along with Somerset Cricket Foundation), rugby (North Petherton), hockey (Taunton Vale) and football (Staplegrove) clubs that we are involved in has always been vital to to us as we have dealt with the diagnosis and continued care and they’ve never turned one of my boys away from playing the sports they love for fear of their condition. 

So that’s it - that’s the story and the why….if you’d like to support me running around London, on what no doubt will be the hottest October day since records began, then please donate and feel my gratitude and that of everyone who benefits from the Grand Appeal.

Much love,

Lorraine