MAY Warrior

Hazel

Hazel's epilepsy story began in March 2022 when she experienced her first seizure.

What followed was a blur of medical interventions, including numerous invasive tests, hospitalisations, ambulance rides, and even plane trips, all while her parents tirelessly advocated for an explanation.

Their persistence and determination eventually led to answers in October 2023: Hazel was diagnosed with an incredibly rare genetic condition known as ATP6V1A related epilepsy.

ATP6V1A-related epilepsy, stemming from mutations in the ATP6V1A gene, manifests as a form of developmental epileptic encephalopathy (DEE93).

This disorder disrupts normal cellular processes due to faulty functioning of the ATPase enzyme, which plays a pivotal role in lysosomal and endosomal activities.

As a result, warriors like Hazel experience early-onset seizures, often resistant to conventional antiepileptic medications, alongside developmental delays and cognitive impairments.

What makes Hazel's case even more extraordinary is its rarity.

She is among fewer than 50 documented cases worldwide and the sole known instance in Australia so far.

Faced with such unique circumstances, Hazel's parents set out on a mission to raise awareness about the diverse spectrum of epilepsy conditions and challenge the stigma surrounding epilepsy diagnoses.

They launched an Instagram page @hope.for.hazel, sharing Hazel's story and advocating for greater understanding and support for individuals and families affected by epilepsy.

Hazel's story perfectly describes the rollercoaster of challenges and wins encountered by those living with rare genetic conditions and epilepsy. And despite all that her condition has thrown at her, Hazel remains strong, determined, loving and always with her infectious smile.

She is truly 1 in 780 Million.

$5 from every tee sold in this collection will go straight to Hazel and her family

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