Sofi's epilepsy story - Epilepsy Queensland - share your story

Sofi's Epilepsy Story

When she was just 8 months old, Sofi had her first seizure - it was a tonic-clonic seizure that lasted for an hour. A couple of months later, Sofi was diagnosed with SCN1A-related epilepsy.

Sofi's seizures

Her parents, Rafa and Mel, describe Sofi’s first seizure as the “most terrifying moment of [their] lives”. Although the ambulance was there within 15 minutes, they were unable to stop the seizure.

“Sofi’s seizures can go for a long time. We’re always on alert, especially when she’s unwell,” says her dad Rafa. She has had a range of different types of seizures, but mainly Sofi has febrile seizures. 

Her longest seizure lasted for an hour and 40 minutes. This year alone, Sofi has been in around 30 ambulances, been in intensive care twice and on one occasion, she even had to be intubated.


Full of personality

At just over a year old, Sofi’s curious and caring nature are shining through. Rafa says, “Sofi is sparkly and energetic, she’s inquisitive, brave and cheeky. She loves swimming, going for walks, reading, music (singing, playing instruments and dancing) and, of course, ‘The Wiggles’!”



Trouble sleeping

Sofi’s sleeping habits have also been a cause for concern, with her parents worrying about how it will affect her development and quality of life. “We co-sleep so we know immediately if a seizure starts, but this means we don’t get the most quality sleep,” says Rafa. “We have had trouble putting her to sleep and keeping her asleep. She sometimes wakes up in the middle of the night to play and will stay awake and alert for hours.”

Finding support

It has been challenging at times for Rafa and Mel, but taking time for themselves and finding a positive support system has been really helpful for their mental health. “It’s hard to step away but it gives strength (mental and physical) to cope and to be able to give your best,” says Rafa. Sofi’s mum Mel was also able to get some reassurance after chatting with Donna from Epilepsy Queensland. “It was great just to talk, and be understood, but also to receive some resources specific to Sofi’s type of epilepsy.”


Running for awareness

Both Rafa and Mel are passionate about raising awareness of epilepsy and so this year (2021), Rafa participated in the Walk For Epilepsy. His goal was to run a half marathon (21.1km) every day during the month of October.


A message of encouragement

Rafa and Mel’s message to others in a similar situation: “Surround yourself with supportive and positive friends and try to live in the moment rather than (over)thinking about the future. The future is unpredictable so live in the now like there’s no tomorrow, and keep strength to adapt to whatever may come.”

If you’d like to share your story, you can send it to us or request the list of prompt questions by emailing

Epilepsy Queensland