August Warrior
Cody
Cody’s epilepsy journey began in July 2008, just one day after his fourth brain surgery, to remove part of a rare brain tumour and drain cerebrospinal fluid.
This life-threatening seizure lasted over two and a half hours, ending with Cody in an induced coma.
For nearly two years, Cody had no more seizures until May 2010, when he had a seizure at kindergarten during a Mother’s Day morning tea.
This marked the real beginning of his epilepsy struggle. Cody experienced up to 500 seizures a day and was diagnosed with refractory epilepsy, benign focal epilepsy, constant absence seizures, convulsive seizures, and Electrical Status Epilepticus of Sleep (ESES), meaning his brain was seizing constantly during sleep.
His cognitive abilities declined as he was in a near-constant state of seizure, unable to live a normal life.
Despite trying all medications his neurologist could think of and being discussed in Complex Case Management team meetings multiple times, there were no improvements.
Cody had countless EEGs, ambulance trips, MRIs, PET scans, outpatient appointments, and blood tests, but no solutions emerged over nine years. In 2018, nocturnal seizures, which triggered a seizure alarm, severely impacted the family and prompted their fundraising efforts.
They raised $25,000 to get Cody an assistance dog, Lulu, a labrador who arrived during the height of lockdown in August 2020, and provided both companionship and seizure alerts.
After exhausting pharmaceutical options, Cody’s neurologist suggested a Vagus Nerve Stimulator (VNS) in 2019.
Not covered by Medicare at the time, the procedure was funded by private health insurance.
The VNS was gradually turned up to Cody’s therapeutic level, successfully stopping his seizures.
This allowed Cody to wean off all anti-epileptic medications, and eventually, they were able to turn the VNS off.
Cody has undergone 11 brain surgeries to date for tumour removal, brain bleed repairs, and VP shunt insertions and replacements.
His journey has been long and emotional, affecting the entire family with PTSD and anxiety, always on edge for the next seizure or emergency.
Despite the many challenges, Cody is now seizure-free for the first time in 16 years and living his best life, a truly inspirational story of resilience and hope.