Madison O’Loughlin

I’m taking part in Walk for Epilepsy because...

💜 Walking for Charlie 💜

This year, I’m walking and raising money for my incredible 3-year-old son Charlie, who has a rare genetic disorder caused by a misspelling of the KCNA2 gene. This gene change has led to generalised epilepsy with multiple different types of seizures. Despite every effort, we haven’t been able to get his epilepsy under control, which means we are constantly in and out of hospital.

Recently, he was also diagnosed with DEE-SWAS – Developmental and Epileptic Encephalopathy with Spike-Wave Activation in Sleep. This is a very rare form of epilepsy, affecting only about 1 in 200 children with epilepsy (0.5%).

Through all of this, Epilepsy Victoria has been a lifeline for us. They have supported our family by continually helping to update and adapt his seizure management plan, providing emergency medicine training, and being there whenever we need guidance.

Despite everything he faces, my little boy is resilient, strong, and full of joy. He amazes us every single day with his happy spirit and determination.

I’m walking to raise awareness, to support the incredible work of Epilepsy Victoria, and most of all, for my amazing boy—so that one day, families like ours can have more answers, better treatments, and brighter futures.

Every step I take is for him. 💜 Thanks in advance for you contribution!