Dylan Thorne was just six months old when he had his first seizure due to a severe form of epilepsy known as Dravet Syndrome.
It was July 4, 2012 when he was in the bath with his brother Jett and he slumped forward with only his right hand moving.
Dylan’s mother Rayleen Thorne said she would never forget that day.
The Southern River resident wants the community to be aware of the effects epilepsy has on people ahead of Epilepsy awareness month in November.
Mrs Thorne fully supports Epilepsy Action Australia which is launching E-Tea; a nationwide community fundraising initiative that encourages supporters to host their own morning or afternoon tea events to raise funds and awareness for the condition.
Mrs Thorne said there are many children in Perth who have been diagnosed with Dravet Syndrome and one of the main challenges she faces is getting the epilepsy recognised.
“It severe form of epilepsy,” she said.
“I am Dylan’s number one advocate, at least he has me but there are so many people out there who are suffering alone.
“What about teenagers, or seniors, it can be a very isolating and scary illness.
“Sometimes when you’re having a seizure it’s just blurred speech or you can’t walk properly and people can think you are drunk, I think the wider community such as the police need to be made aware of the condition.”
When Dylan had his first seizure Mrs Thorne thought he was having a stroke.
She said they called the ambulance who thought it could have been an allergic reaction.
“The right side of Dylan’s body became paralysed, after we got him settled, four days later the same thing happened to his left side.”
After a week-long hospital stay, Dylan’s results came back as normal baffling his family.
Mrs Thorne said she had no idea what was going on or how to deal with it.
“A status seizure is anything that is over five minutes long,” she said.
“Dylan’s longest one was 11 hours.”
Dylan was eventually diagnosed with Dravet Syndrome.
Also known as Severe Myoclonic Epilepsy of Infancy, it is a severe and catastrophic form of epilepsy.
Some of the symptoms of the condition include delayed language and speech issues, movement and balance issues, chronic infections, respiratory problems, and disruptions to the autonomic nervous system.
Despite the challenges that Dylan and his family face on a day-to-day basis Mrs Thorne said she is very blessed.
“He doesn’t have daily seizures,” she said.
“We are more blessed because we appreciate the quality of life and it is fantastic.
“He can walk, he can talk and he’s even in mainstream kindy.”
Mrs Thorne and her family have just returned from a trip to the Gold Coast.
Funded by the Starlight Wish Foundation, Mrs Thorne said it was fantastic.
“Dylan has a life limiting illness,” she said.
“We don’t let it stop us from enjoying life, we are prepared for the worst but we hope for the best.
“He’s a beautiful, special and cheeky little boy.”
Epilepsy Action Australia are giving away free goodie packs containing lots of delicious treats and baking supplies, as well as tea and coffee samples to anyone who registers to hold an event.
For more information visit epilepsy.org.au or call 1300 37 45 37.
