Seizure death inspires awareness campaign

THE TRAGIC death of a teenager from an epileptic seizure sparked his sister to support an awareness-raising campaign for his condition.

Llinos Williams spent years trying to come to terms with the tragedy of her brother’s untimely death before she too was diagnosed with the same condition as him.

She reports that her diagnosis made her even more determined to support Epilepsy Action Cymru, who recently welcomed the news that they were chosen to receive £159,300 from the Big Lottery Fund.

The grant money will be used to improve access to information about epilepsy at different stages of care.

30-year-old Llinos Williams from Pwllheli was diagnosed with epilepsy following her having a seizure in her workplace.

The realisation that she’d been diagnosed with such a dangerous condition, especially one which had devastated her family the way it had, shocked her due to the fact that she had absolutely no idea that she was suffering from it.

Llinos said: “One of my brothers, Dylan, passed away after having a seizure when he was just 18-years-old in 2007. It was such a huge shock to the family as even though we knew he’d had epilepsy for about ten years, we didn’t know that people could die from it.

“I was diagnosed with epilepsy in 2012 after I’d had a seizure in my work place. After visiting my GP I later found out that it had been triggered by an infection.

“I was really scared because I was just thinking about what had happened to my brother, and to add to everything else as well I was scared for my other brother, Carwyn, who had been diagnosed in 2010 too.

“I had no idea that I had epilepsy for a long time, I had no problems at all when I was a teenager but that first seizure turned everything around.”

However, with the support of Epilepsy Action Cymru, Llinos and her family have managed to overcome many of the challenges that they face and are now championing awareness of the condition and helping others to learn more about it.

“Thankfully I’m really healthy now. I was lucky enough to find out about Epilepsy Action Cymru shortly after I was diagnosed and they have been so helpful with getting not just me, but my family to come to terms with my condition.

“Through them I’ve become a volunteer to raise awareness of the condition and give people advice on how to manage it, and have even spoken at conferences about my experience.

“It’s fantastic that the Big Lottery Fund has awarded this money to Epilepsy Action Cymru. The work that they do to help people like me is brilliant, and it’s important to be able to provide that support to as many people as possible.”

Ann Sivapathan, Wales Manager at Epilepsy Action Cymru, said: “We are delighted to receive this grant from the Big Lottery Fund.

“The money will allow us to provide a vital service to the 8,000 people living with epilepsy in Wales in the language they feel most comfortable with.

“We will be able to give accessible support and information, provide a voice for people with epilepsy on important healthcare issues and limit the social isolation felt by some people with epilepsy in this area.

“We believe this role will be a real lifeline for many people living with epilepsy in Wales.”

There are 13 other projects across Wales which have been granted a share of the £3,881,083 ‘People and Places’ funding from the Big Lottery Fund.

Leonard Charity Disability will be using £498,960 to expand their ‘Can Do’ programme from Cardiff, Newport, Swansea and Wrexham into more of Wales.

It is hoped that this expansion will offer 1,200 more young disabled people volunteering opportunities on community projects that will enhance their life skills and levels of independence, and ultimately break down social barriers that they face in day-to-day life.

Michelle Impanni, Senior Programme Coordinator for Can Do in Wales, said “We are delighted we can now develop the programme to reach even more young people across Wales to benefit from this volunteering programme.

“Can Do aims to support and equip our participants with the skills and confidence they need to live their lives fully and participate in society.”

Time to Change Wales, which is a partnership between Mind Cymru, Gofal and Hafal, have managed to secure funding from the Big Lottery Fund to deliver a brand new anti-stigma campaign for children and young people.

Antony Metcalfe, Programme Manager of Time to Change Wales, stated: “We are delighted to have secured funding from the Big Lottery Fund to deliver a brand new anti-stigma campaign for children and young people.

“We are really pleased to have the support of schools and teaching professionals across Wales and look forward to working with them to improve the lives of young people.

“It is crucial that action to improve mental health and reduce discrimination starts at a young age and we believe that this campaign will play an important part in this agenda.”

The People and Places programme seeks to award grants of between £5,001 and £1 million for a broad range of different community projects.

Highlighting the importance of this, Rona Aldrich, Wales Committee Member for the Big Lottery Fund, said: “Programmes like People and Places are making a difference to the lives of so many people in communities across Wales.

“It delivers on our promise to use National Lottery funding to regenerate and revitalise communities, tackle disadvantage head on and leave a lasting legacy.”