Emily’s journey with Dravet started when she was around 8 weeks old, or so we thought.  The truth is is that it happened at conception and was in her genetic coding.  That was 22 years ago, and before the kind of research and technology we have today.  However, because of Dravet’s devastating genetic complexities it still has no cure and is under-researched.  Even with anti-epileptic medications and a certain diet it is still life long,  intractable, and has a very poor prognosis for children and adults living with the condition.  It has an array of comorbidities, and patients are at extreme high risk of status epilepticus (prolonged seizure), and ultimately SUDEP (sudden unexplained death of epilepsy).

Because of Emily’s roller coaster Dravet journey, myself, Emily’s brother Ben, his girlfriend Mollie, Mollie’s cousin Fran and Mollie's friends Zoe, Sam & Jess are taking part in the annual London Marathon Walk for the amazing charity Dravet Syndrome U.K.  Since becoming part of DSUK’s family we have had so much support.  Their resources and up to date info on research is so helpful.  Emily has also had a grant for life saving equipment. They also put us in touch with an invaluable private family support group whose loved ones also have a Dravet diagnosis. 

We really want to give back to them, through spreading awareness and raising money for them to fund further research.  This is why we have signed up to walk 26 miles across the city of London!

Emily’s Dravet continues to  have a huge impact on her health, especially with the persistent, random & violent drop seizures.  This prevents her accessing life as a Neuro typical 22-year-old female.  She doesn’t give up though and is the biggest warrior we know…

So please would you help support Emily, and other Dravet warriors, by donating to our just giving page so that we can in turn give back to Dravet Syndrome U.K?

THANK YOU 💜💙🦋