“It take less than one minute for Dravet Syndrome to turn into a life threatening day. But, it also takes less than one minute to help make a difference."
Lincoln mum, Chloe Hanson, 26, will run her local Asda Foundation City of Lincoln 10K this Sunday to raise money and awareness for the charity that has helped her support and care for her daughter Winnie.
Winnie was diagnosed with a rare form of epilepsy, Dravet Syndrone, at eight-weeks-old, following a seizure in 2018 that her mother describes as ‘terrifying’.
Chloe said: “When I first read and heard those words Dravet Syndrome, the worry in my heart went to a place that I never knew existed. We can’t say ‘she will grow out of it’ – this is a lifelong battle for us and Winnie.
“The reality that we might outlive our precious child is always present.”
Current treatment options for Dravet Syndrome are very limited and patients face a 20 per cent mortality rate due to Sudden Unexpected Death in Epilepsy (SUDE).
“We love Winnie exactly how she is. But seeing our beautiful little girl fighting for every breath is heart breaking and is something we would not want any other parent to go through.
“We have lost count of the times Winnie’s seizures have led us to the A&E resuscitation area this year.”
Life has changed dramatically for Winnie and her family since diagnosis.
“We have a new way of looking at life, we have a new level of patience and hope. I no longer imagine life 15 years from now, I simply take the world day by day.
“My understanding and thought processes have changed. My knowledge has grown. What I believe my purpose is in life, has transformed.
“Life with a child with Dravet Syndrome can be amazing, then it's awful, and then it's amazing again. We burst with pride and joy at every milestone Winnie reaches.
Chloe will take on the charity run with a team of 25 runners including her mother Abi and father Tim Davies.
The team are supporting Drave Syndrome UK and have already managed to raise over £3,500 for their 10K alone.
Dravet Syndrome UK is a charity that was founded by parents looking for support and information about the syndrome, its treatments and research.
“The charity holds a special place in our hearts as it has provided us with a support network and helped educate us on Winnie’s condition. It has also provided us with bedtime monitors meaning we can relax a little more at night without constantly checking on Winnie.
“It take less than one minute for Dravet Syndrome to turn into a life threatening day. But, it also takes less than one minute to help make a difference.”
For more information on the charity or Dravet Syndrome, feel free to look at their website www.dravet.org.uk.
Chloe’s Just Giving page can be supported at https://www.justgiving.com/fundraising/winnie-davies