Hayley Waite
Marathon Walk London for DSUK
Fundraising for Dravet Syndrome UK
Story
Ethan is a fun-loving 8-year-old who loves rollercoasters, playing Mario Kart and is the world’s biggest Gruffalo fan! His Dravet journey started at the age of 7 months and since then, I have lost count of the number of times he has been hospitalised, often spending time in intensive care due to status epilepticus. Dravet Syndrome is a rare, genetic, life-long condition so sadly will never go away and has affected all areas of Ethan’s development. Despite this, Ethan is so resilient, bouncing back quickly after every hospital stay and he takes all his medical appointments in his stride.
Having a child with Dravet Syndrome is overwhelming and we are so thankful that we came across Dravet Syndrome UK, who are dedicated to supporting families like ours. Not only has the charity been a great source of advice for us as a family, but they have enabled us to meet in person with other families living with Dravet Syndrome, which has been invaluable.
Having a child with Dravet Syndrome is overwhelming and we are so thankful that we came across Dravet Syndrome UK, who are dedicated to supporting families like ours. Not only has the charity been a great source of advice for us as a family, but they have enabled us to meet in person with other families living with Dravet Syndrome, which has been invaluable.
I really want to give back to Dravet Syndrome UK through spreading awareness of the condition and by raising money for them to fund further vital research. This is why on 10th September 2022, my friend Julie and I will be joining the the Dravet Syndrome UK community to walk 26 miles at the Marathon Walk London.
So, please can you help Ethan and other families with this devastating condition by donating to this fundraising page. Thank you!
To find out more about Dravet Syndrome and the work of DSUK, visit www.dravet.org.uk. If you want to join us in this exciting challenge, visit https://www.dravet.org.uk/events/marathon-walk-london/ for more details and to register.
