The ‘What’:

Four years ago, a bunch of intrepid and amateur swimmers took to the icy waters of Lake Windermere to raise money for a small charity called Dravet Syndrome U.K. (“DSUK”) - all in the name of Freddie-Bo Truelove.

This year, WE’RE BACK. Bigger, stronger, older, and more determined than ever. A powerful team of 17, intend to attempt a massive two mile race around the murky waters of Windermere on Friday 10th June 2022. The Great North Swim is the largest open water swimming event in the U.K., with water temperatures rarely getting above 14.5 degrees in June. It’s cold and it’s bloody hard work, it takes grit, determination and tenacity : all qualities that somehow make it the perfect event when you know a little about the boy we’re all doing it for.  

The ‘why’:

Freddie Truelove is a 5 year old warrior. I mean, a true warrior that most people will seldom meet in a lifetime. We’re lucky enough to call him our son. 

At 5 months old, Freddie suffered his first seizure. A full body violent tonic-clonic seizure, that shook our world to it’s core. A succession of violent and long seizures followed, until he was diagnosed with the rare neurological disorder, Dravet Syndrome, in February 2018. 

Four years have past since that day, and it’s been one hell of a rollercoaster. At ages 0-2 Freddie suffered from regular debilitating status seizures, some upwards of an hour in duration. Ages 2-4 have seen 6 new seizure types appear, including myoclonic seizures that often exceeded 4,000 per day. He has tried and failed 11 anti-epileptic medications, has had a vegas nerve stimulator implanted in his chest wall, has lived a life primarily on a medical ketogenic diet and spent 5 months in the High Intensity Unit at Sheffield Childrens Hospital for continuous seizure activity. In addition to seizures, Dravet Syndrome can include a host of other comorbidities, including speech and language delay, physical impairment and behavioural issues. 

Dravet Syndrome is a rare genetic epilepsy. It is refractory to medication, and there is still, no cure. 

The outlook:

With all that said - there is great hope on the horizon. Whilst there is currently no cure, the answer lies in the many research projects that are actively underway. Specifically, those looking to treat the underlying cause of Dravet Syndrome (a mutation in the SCN1A gene) via gene therapy and alike. I have no doubt in my mind, that one day, this devastating disease will have a cure, for Freddie, and many children like him. 

DSUK supports a number of research projects via its funding arm. Some of these projects, and the ones that we intend to support, are looking to crack the genetic code in order to make Dravet Syndrome a thing of the past. There are already numerous companies that are progressing their research into clinical trials in humans - which is HUGE. But all this requires funding. And so here we are, asking you to help us to help Freddie, and our beautiful community. 

** 100% of the funds raised from this event will be going directly to the research projects we feel will impact the only thing that really matters to Freddie and our family - a cure **

Whilst Freddie continues to fight the seizure monster on a daily basis, he still wakes each morning with a whirlwind of energy and optimism. His bravery knows no bounds, his love of life is infectious, and his ability to find joy in almost every situation is a lesson we all should heed. He blows our socks off, and when you meet him, I’m sure you’ll say the same. 

So, for Freddie, we ask that you, your friends, family, colleagues, neighbours, strangers and anybody else you know, could dig deep and help in any way you can.

Where there is great love, there are always miracles 💜