An Okehampton couple, whose nine-year-old daughter suffers from a rare, life-limiting form of epilepsy, are backing a UK-wide campaign to raise awareness of the condition to help improve diagnosis and care.

Sam and Mike Slocombe are just two of many across the UK who are sharing their experiences of the neurological condition Dravet Syndrome to raise awareness of the disorder in support of charity Dravet Syndrome UK.

Sam and Mike’s daughter, Paige, was diagnosed with the condition aged one after months of seizures, repeated ‘blue light’ ambulance dashes to hospital and stays in ICU.

Mum Sam said: ‘Paige lived a normal life up until she was seven months old when she had her first seizure whilst in the bath. I had never seen a seizure before, and I thought she was going to die. I carried her limp and lifeless body into the bedroom and called 999. Paige was rushed to hospital where a huge team of doctors battled to save her life. She was resuscitated numerous times over the next two hours.

‘Paige spent a few days in hospital recovering and was sent home with a diagnosis of febrile seizures. A few weeks later she suffered another seizure at home and was rushed to hospital. This time the seizure was so tough on her little body that her airways collapsed, and she was put into an induced coma and sent to intensive care.

‘We spent the next four years of her life dealing with life-threatening seizures, spending just as much time in the hospital as we did at home. The fear, the worry, was like a living nightmare.’

In 2018, Paige was fitted with a vagus nerve stimulator (VNS), a small device which sends regular small electric shocks to the brain which has dramatically reduced the number of seizures she experiences. Sam added: ‘It has absolutely transformed her quality of life.’

Alongside severe and difficult-to-control epilepsy, Paige has had to contend with mobility issues, difficulty swallowing and autism, which have also been caused by the Dravet Syndrome.

However, this has not stopped her. Sam said: ‘I have no idea how we have got through all this and can still laugh and smile and find the good in each day. Paige is incredibly strong and resilient and has for sure made me the person I am today. I am in awe of her positively and strength. I am so grateful she’s still with us.

‘Paige never lets Dravet define her. She is funny, quirky, sassy, and takes it all in her stride. I look up to her and admire her strength. People comment on my positive attitude, but it’s Paige that has made me the person I am today. Paige loves to sing and dance. She loves school and her friends, and she loves chocolate! She has expensive taste and only eats Lindt! She is hilarious at cracking jokes that make no sense and she’s always smiling.’

Dravet Syndrome is caused by a genetic mutation in one of the brain’s proteins which alters the way the brain works. As well as epilepsy, the condition also causes developmental delays and learning disabilities.