My first experience of epilepsy was when my son Samuel started having seizures at just 6 months old, his condition was finally diagnosed shortly after his 2nd birthday and it took a further 12 months for us to find him an anti-epileptic drug (AED) that helped to control his condition.

During this difficult period, my wife and I experienced the most terrifying anxiety and frustration as we tried and failed to secure a diagnosis and care plan to help our little boy.

At 3 years old, we thought we’d found an AED to control Samuel’s seizures as he went just over 9 months without an episode, however as we were soon to learn, with epilepsy just when you take one step forward inevitably it ends with two in the opposite direction.

At the height of Samuel’s seizures we were fortunate enough to be gifted a seizure alarm by The Daisy Garland, which allowed us to monitor his seizure activity throughout the night and give us the time to take interventive action before his seizures escalated into anything more serious.

Now 6 Samuel at the time or writing has been seizure free since the 7th November 2019, following surgery at Great Ormond Street to remove a small section of his frontal lobe, from where his seizures were originating from. We still have a long way to go as we wean Samuel off his medication over the next 12 months, however, we are one of the lucky ones as we have every reason to be optimistic that we can now find a way of helping Samuel manage his condition.

Of the 600,000 people living with epilepsy in the UK, around half are still having seizures. With better treatment, an estimated 100,000 more of those people could be seizure-free.

It can't be underestimated just what being seizure-free can mean to people who suffer with epilepsy, those fortunate enough to find a control, experience an overwhelming sense of freedom and relief in being able to create distance between the conditions unpredictability and frustrating hold over everyday life.

There is no known cure for epilepsy, those people diagnosed with this condition have to manage the impact for life.

Unfortunately, despite all the efforts of charities such as The Daisy Garland, the condition is still stigmatised amongst the general public and more needs to be done to help raise awareness of the condition, the impact it has on both individuals and families affected and improving the treatment available in the UK.

What are we doing?
Members of ActiveQuote will be embarking on the very first ActiveQuote 3 Welsh Peaks Challenge.

Staff will be leaving the ActiveQuote office in Cardiff, South Wales at midday on Friday 3rd July and travelling up to North Wales in preparation for the challenge. There will be a 3am wake up call, with the first climb being Snowdon starting around 4am. They will then move onto Cadair Idris and then to Pen Y Fan, all within 24 hours. This is a huge challenge but one that staff are getting excited about.

When? Friday 8th July, 2022.

How can I help?
You can show your support by sponsoring ActiveQuote staff. Simply click on the link to donate. Your donation will go directly to The Daisy Garland and used to help continue the amazing work they carry out for thousands of families every day.

Rob Saunders