On April 7th this year myself, Jack, and a group of family and friends are going to run the Lincoln 10K with the aim to raise money and awareness for the charity Dravet Syndrome UK.

This is a charity relating to a condition we had never heard of, until our beautiful baby girl, Winnie was born. When Winnie was only 8 weeks old, we had a terrifying scare when she had her first seizure, which we thought, was a bad reaction to her first vaccinations. Little did we know, after many more seizures, resulting in hospital admissions, invasive tests and scans, our precious daughter Winnie would be diagnosed with the condition Dravet syndrome. 💜💜💜 

Dravet syndrome is a rare, catastrophic, lifelong form of epilepsy that begins in the first year of life with frequent and/or prolonged seizures. Common issues associated with Dravet syndrome include: behavioural and developmental delays, movement and balance issues, delayed language/speech issues and chronic infections. Current treatment options are very limited and patients with Dravet syndrome face a 15-20% mortality rate due to SUDEP (Sudden Unexpected Death in Epilepsy).

When I first read and heard those words Dravet Syndrome my world ended. But in a way it had only just begun. The worry in my heart went to a place that I never knew existed. The, ''she will grow out of it'' is said no more, the ''it's just a phase'' has now ended. The thought of ''it will never happen to me'' is ever distant. The reality of we might outlive our precious child is always present. However on that day, a whole new life began. 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. But let me tell you it's the greatest blessing to see the world through those beautiful blue eyes.

‘Life with a child with Dravet Syndrome can be amazing, then it's awful, and then it's amazing again.’

‘Breath in the amazing, hold on through the awful, and relax and exhale during the ordinary. Miracles do happen.’

Winnie is Winnie and we love her exactly how she is 🌟 But seeing our beautiful little girl fighting her own body for every breath, whilst talking to her trying to reassure her is heart breaking and something we would not want any other parent to go through. In just one year, we have lost count of the ambulances into to A&E’s resuscitation area, due to seizures which can last between minutes or hours, this has resulted in Winnie being on a ventilator several times and being treated in the children’s intensive care unit. Winnie has also had to endure two MRIs and EEGs, and a lumbar puncture in order to get her diagnosis. Going through this was something we never dreamt of when we thought of our lives as parents but Winnie is our absolute everything and is a true Dravet warrior. We burst with pride and joy at every milestone Winnie reaches. 

Winnie has taught us true strength, courage and the importance of family and that life is so much more than the things we cannot do such as go on sunny holidays. Winnie is our sweet little blessing, a true miracle that has been sent our way to cherish and love unconditionally. 

As 2018 has had so many lows, we have decided to start 2019 positively with our first effort to raise money and awareness for the inspiring charity Dravet Syndrome UK.

Dravet Syndrome UK is a charity that was founded by Dravet parents looking for support and information about treatments and research, all of which was sadly lacking in the UK at that time. 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. For more information on the charity or Dravet Syndrome, feel free to look at their website www.dravet.org.uk.

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. 

Winnie Woo your journey so far has been longer than most. You are perfect. You are different and special in your own way. You are our Winnie and what a true gift you are 💜✨

#dravet #dravetuk dravetsyndromeawareness #dravetwarrior #epilepsy #epilepsyawareness

Chloe Davies (Mummy to Winnie, 15 months old)