An eight-year-old from Colwyn Bay with a rare, life-limiting form of epilepsy has helped his family raise more than £1,600 to support a UK-wide campaign to raise awareness.

Zac Britton, alongside his parents Karen and Matt, took part in an epic challenge to run, walk, or swim each every day in May to raise awareness of Dravet Syndrome UK - a charity that supports the one in 15,000 people like Zac with the condition.

For mum and dad, the challenge was to complete 5km per day but Zac, despite facing significant challenges and experiencing a number of seizures over the month, walked at least 2km every day. Together the family raised more than £1,600 for the charity.  

Their feat has been announced as part of Dravet Syndrome Awareness Month which takes place in June.

"In December 2017, Zac was nine months old and started making strange noises," said mum Karen. "His eyes were closed and he was floppy and I yelled at Matt to call an ambulance. He wasn’t asleep, he was unconscious.
 
"When we got to the hospital, a team of around 10 medics were assembled, frantically hooking him up to machines.

"They finally managed to stop the seizure and resuscitate him. Zac was put on a ventilator and suffered a collapsed lung. A doctor told us that they didn’t know whether he would survive or have brain damage. The relief and elation we felt when we were finally told he was off the ventilator was incredible."
 
Over the next few weeks Zac had more prolonged seizures. It was then that Dravet Syndrome was first mentioned and a few months later tests confirmed he had the condition.
 
As well as seizures, Zac has autism, Sensory Processing Disorder, ADHD and dyspraxia. He has difficulty sleep, eating and swallowing. Although he can walk and run, balance issues cause him to fall over regularly - all of which is directly linked to his condition.

Although it is rare, Dravet Syndrome is one of the most common genetic epilepsies. It is also one of the most resistant to treatment. In around 85% of cases - including Zac's - it is caused by a mutation in a gene known as SCN1A. 
 
Individuals may have multiple seizures day and night and there is a much higher risk of SUDEP (Sudden Unexpected Death in Epilepsy) compared to other epilepsies.
  
"Zac is one of the luckier ones at the moment," said Karen. "Instead of life-threatening seizures, his are shorter and don’t require rescue meds, so he doesn’t always have to go to hospital.

"We haven’t been given any support however, so it’s really difficult. No-one looks at Zac's needs as a package. Every professional takes on one aspect and no-one has full medical oversight.

"He is an amazing child. He's fought so hard to stay on this earth with us, despite the seizures and trauma he has endured. We are incredibly proud of him.

"Through Dravet Syndrome UK, we have connected with people who understand what we are going through as a family. We have gained so much insight into the condition. The charity has been a lifesaver for us.”

Dravet Syndrome UK is the country's only charity dedicated to the condition. It provides emotional, practical and financial support for more than 550 families. It also supports education and information for professionals and funds research into treatments.
 
Galia Wilson, Chair and Trustee of Dravet Syndrome UK said: "Dravet Syndrome is a devastating condition.

"We are joining with families across the UK to share little moments of what it's like to care for someone with Dravet Syndrome so we can reach even more people in need of our vital support."
 
Early signs of Dravet Syndrome include prolonged seizures - often triggered by fever - in early infancy. If you suspect that your child has Dravet Syndrome, you can ask your GP, paediatrician or epilepsy consultant for a genetic test. 
 
To find out more or to support families living with the condition, please visit www.dravet.org.uk or email info@dravet.org.uk