Madeleine Cox

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

I want to raise awareness about genetic epilepsy, specifically NEXMIF related developmental epileptic encephalopathy which is what Stella was diagnosed with at 13 months old (22/09/2022). 

We’re taking steps for Stella so that one day soon she can too! Stella’s seizures are so frequent and so difficult to control (myoclonic, absence and atonic seizures) despite her being on 6 AED’s and the Ketogenic Diet that she is globally delayed in all milestones including walking. 

Our girl is brave, bright and resilient. She would love nothing more to run around, carefree as toddlers should. Not spending her days in therapies, medical appointments, having medications multiple times per day and being restricted by her environment due to the risk of injury associated with her epilepsy. We need greater investment into epilepsy research, treatment, support and one day gene therapy. Please help me by giving whatever you can using the 'Donate' button. The more people that know about the walk, the greater the impact, so please also spread the word by sharing our page with your friends and family. Thank you in advance for your generosity, it means a lot!