Valerie had her first seizure at just 3.5 months old. Her parents found her in the cot, drooling, with twitching limbs and flickering eyes. Terrified, they called 000 and waited half an hour for an ambulance to arrive. In hospital, an EEG resulted in an epilepsy diagnosis and Valerie was started on anti-seizure medications.

As months passed, Valerie stopped meeting developmental milestones, leading to diagnoses of global developmental delay and cortical vision impairment. Her mother became her full-time carer, managing therapies and taking Valerie to a special school for vision impairment.

Now nearly five years old, Valerie is nonverbal and non mobile, relying on PEG feeding. Her parents face significant challenges, including fears for Valerie's safety, as she has experienced around 1,200 seizures, and requires constant monitoring.

The emotional toll is huge. Nonetheless, Valerie's sassy personality shines through, and her mother remains a fierce advocate for better support and technology to ease the burdens of caregivers.