on Sunday 26th May from Clacton pier to Walton pier; 10 am start. We will be raising awareness for Epilepsy Action.

we are all so very grateful to every one of you that walk with us, share our page or donate.

Sammi named our team “Born to fight” 💜💜💜

Sammi was spoken to today & she wanted us to share her story & some valuable information with you all.

Thank you all from the bottom of our hearts for your messages of support, caring and love. 💜💜💜 - sammi & jacky xx

When Sam was first diagnosed her mum jacky, even Sammi herself & family assumed that medication would be started and she would be seizure free as many people they knew with epilepsy were; including her daughter Emily. The aim of neuro is always to be without any, however sadly for many that is still a challenge as there is the lack of awareness & funding therefore the medication choices & other options for people with uncontrolled seizures are limited.

This is why Sammi endured a year of daily seizures to the point that she went into status epilepticus (seizures that do not stop without recovery in between) this is a medical emergency & unfortunately claims the lives of up to 40% of people who go into status. Luckily Sam was already in hospital so was ventilated & spent the week in ITU which we are very grateful for. 5 weeks on a ward & she is still recovering.

We are doing this walk to save the lives of many in the future by funding research for a cure as status is just one way it claims lives. SUDEP (sudden unexpected death in epilepsy) takes twice as many lives each year than SIDS & 1 in 150 people with uncontrolled seizures will pass from this. Sadly the family know of someone who passed from SUDEP at the young age in her 20s and it most commonly affects young adults. Also epilepsy is 1 of the top 10 causes of death amongst young people in the UK. so why is the funding not there?

Because it is a very embarrassing condition for people to speak about, a very lonely condition & also a hidden disability so no one likes to speak of it. But each of us who are learning, raising & sharing, are all taking the steps to save more lives in the future & we WILL do this for those taken to soon, for those still fighting & for all those who are diagnosed daily in the UK with epilepsy.

We are so grateful to you all for your support 💜💜💜