Kiddipedia
With no family history of epilepsy, Gold Coast parents Rafa and Mel Garcia were shocked to find out their eight-month-old, Sofi Garcia, had SCN1A Seizure Disorder. Sofi’s first seizure lasted an hour, where her muscle stiffened, she began convulsing and lost consciousness – called a general tonic-clonic seizure. It was first put down to a ‘fever-induced’ seizure. However, after experiencing yet another seizure, the family visited multiple specialists before Sofi was finally diagnosed – leaving her parents completely “devastated, isolated and worried.”
Epilepsy is a medical condition that affects the brain and causes recurring seizures, making it the most common serious neurological condition in the world with more than 65 million people globally living with it. Seizures occur when the brain’s nerve cells (neurons) misfire and generate sudden, uncontrollable bursts of electrical activity in the brain. Signs of a seizure can also vary depending on where in the brain the electricity occurs.
Every 33 minutes an Australian will have their life turned upside down by epilepsy, and at that moment, Epilepsy Queensland are there with understanding, information and support to help turn things around.
This March, Rafa and Mel Garcia are supporting Epilepsy Queensland to Make March Purple, an Australia-wide campaign aimed at raising vital funds and awareness so Epilepsy Queensland can keep kids who experience epilepsy safe – through understanding, information and support like seizure first aid and emergency medication administration training.
Epilepsy can impact anyone, at any stage of life, however, it is most common in children under five and adults over 60. As one of the 30,000 Queenslanders living with the condition, Sofi’s parents Rafa and Mel are learning how to live with epilepsy, from carrying emergency medication everywhere they go, to co-sleeping with Sofi so they can leap into action should she need support, to making sure her daycare can administer her medicine if she experiences a seizure in their care. Rafa and Mel have called emergency services more than 70 times since Sofi’s diagnosis – a constant and emotional reality.
With no cure for the condition, Epilepsy Queensland has built a wonderful community of families who they support. When Mel first called Epilepsy Queensland, she said “[they] mostly just listened and understood, which was exactly what I needed.” Not only does Epilepsy Queensland support countless Queenslanders each year, they also provide families like us, and even Sofi’s daycare, with vital training to administer medication that can be lifesaving.
This March, those living with epilepsy and their family members, such as the Garcia’s, are calling on the community to donate. Like many, the Garcia’s are hopeful of a future where a cure is available. “Epilepsy is not just seizures from fast-flashing lights… It’s also not something you’ll just grow out of (although I wish it was),” says Mel Garcia.
Ahead of World Purple Day, the global epilepsy day of awareness on Saturday 26 March, donate by visiting https://epilepsyqueensland.com.au/.
