November Warrior 2024
Valerie
Valerie had her first seizure at just 3.5 months old. Her parents found her in the cot, drooling, her limbs twitching and eyes flickering. Terrified, they recorded the episode while waiting for the ambulance, which took half an hour to arrive. When the seizure stopped, Valerie started screaming.
Once at the children’s hospital, and after doctors had viewed the footage, Valerie was sent for an EEG. This led to her diagnosis of epilepsy and the start of anti-seizure medications.
As the months went by, Valerie stopped meeting developmental milestones, and she was later diagnosed with global developmental delay and cortical vision impairment.
Her mother became her full-time carer after maternity leave, dedicating her time to managing therapies and taking Valerie to a wonderful special school for children with vision impairment.
Now nearly five years old, Valerie is nonverbal and non mobile, relying on PEG feeding due to difficulties with swallowing. The challenges faced by Valerie's family are significant. Her parents grapple with constant fears about Valerie's safety, especially given the frequency of her seizures, which number around 1,200 at time of writing. These include tonic-clonic seizures and subtle episodes that can manifest as eye deviations and she will stop breathing.
The worry of not recognising these signs is a constant source of anxiety. To manage Valerie's needs, her parents perform regular suctioning to prevent respiratory complications, knowing that a lack of constant monitoring can be very dangerous.
Caring for a child with epilepsy involves a huge emotional toll, including incredible guilt when something is missed.
While waiting for NDIS funding to come through, a seizure was missed while Valerie’s parents were sleeping – but the thing is, there’s only so much a tired parent can do on their own without seizure monitoring technology.
As a result of their own challenges, Valerie's mother fiercely advocates for better support and technology to ease the burden on caregivers.
Throughout everything, Valerie's spirited personality continues to shine! As her mum says, “Valerie might not speak but make no mistake, she is a sassy Queen. Her side eye can stop anyone in their tracks! It may be rare but she also has the sweetest smiles (I'm not biased at all!)”.
Her parents take immense pride in her daughter's resilience, continually inspired by Valerie's determination to face each day. While the road ahead is filled with uncertainty and challenges, Valerie's mother remains committed to being the strong advocate and parent her daughter deserves.