Sofi had her first seizure at just 8 months old. It lasted an hour – the most terrifying hour of our lives. It was the first seizure we’d ever seen, and with no family history of epilepsy, we had no idea what could have caused it.

We were told by the doctors in Emergency that it was just a FEBRILE CONVULSION and would probably never happen again. But 6 weeks later, it did. This one lasted 40 minutes. We were given the same 'FEBRILE CONVULSION' explanation but we weren’t convinced.

3 months later, after her longest seizure (1 hour 40 minutes) Sofi was intubated. While we were sitting with her in ICU, the results of her genetic testing came back. They revealed a mutation of the SCN1A gene and we had a diagnosis: Dravet Syndrome. “Don’t google it,” we were told, but of course we did.

In the beginning we had so many questions that no one could answer. We wanted to be reassured and told she might be OK but the more we looked for good news the more we were met with discouragement.

Sofi’s seizures became more frequent, despite being on twice-daily medication, and they would happen at any time of the day or night. We soon realised it was imperative we stay close to civilisation and within phone range, and making plans became near impossible.

Committing to our jobs was a struggle – being sleep deprived and also the anxiety of not knowing when daycare would call next to let us know she was having a seizure. We had to learn to take each day as it comes. To ‘live in the moment’ in the truest sense.

We have called for an ambulance hundreds of times, spent an impossible amount of hours in emergency, given way too many rescue medication doses and watched our little girl turn blue too many times to count.

Despite all of this, Sofi is an incredible, vibrant, energetic, clever and charismatic little human who lives her life to the absolute fullest. She loves her daycare (and so do we – they are amazing at looking after our girl) and, against all odds, she is doing exceptionally well.

Sofi loves swimming, dancing, playing doctor, cooking, reading, yoga, learning Japanese, and singing along to songs in English, Spanish and a couple of our indigenous languages.

We still have a big job mitigating her seizure triggers (heat, illness, bright lights, fatigue, over-excitement, fast moving patterns, sugar...) and managing our work/life/Sofi balance – especially with her insomnia and hyperactivity thrown in the mix.

But we know we have much to be thankful for and we are grateful every day.

$5 from every item sold in this collection will go straight to EPILEPSY RESEARCH