September Warrior
Lilly
Lilly, an 18-year-old from the Gold Coast, has had a wild ride with epilepsy caused by a rare genetic disorder called Glut 1 transporter deficiency disease.
This condition impedes glucose from crossing the blood-brain barrier, leading to severe epilepsy, with Lilly experiencing up to 50 seizures a day at her worst.
Her seizures began at age 7, initially as absence seizures that evolved into more frequent and severe tonic-clonic seizures. Early treatments were challenging, with medications causing debilitating side effects and impacting her daily life and school experience.
Lilly struggled with bullying and exclusion due to her condition, which made her school years particularly difficult.
She tried homeschooling but found a supportive environment at a small school before transitioning to high school, where things worsened again.
Despite numerous treatments and a difficult period of managing seizures and medication side effects, Lilly found some peace in writing. Her book, "Chelsea the Interrupting Cow," aimed to foster understanding of autism and different abilities, and was published in 2019.
Lilly also started a movement called YouToo to promote kindness and address bullying.
High school presented new challenges, with shockingly inadequate support and safety concerns. However, a change to a more supportive school made a huge difference.
Lilly’s passion for acting led her to the Bright Lights theatre, although she had to stop due to frequent seizures during rehearsals.
A turning point came when a specialist suggested trying the ketogenic diet, which proved effective in massively reducing seizures...
However, this all went out the window after receiving the COVID-19 vaccine, which devastatingly led to a resurgence of seizures.
Upon turning 16, Lilly’s care transferred to adult care. Extensive testing and consultations led to a new medication that has made a significant difference.
Now, Lilly is pursuing a career in Auslan (Australian Sign Language), having completed several certificates, and she is currently working towards a diploma.
Her positive and resilient nature is an inspiration as she balances her studies with ongoing challenges. Lilly is also involved in research for Glut 1 deficiency, hoping for new treatments. Despite everything, she remains hopeful for a future cure for epilepsy.