Jacob and Oliver’s story

Jacob and Oliver share a unique bond that extends beyond their familial ties as father and son — they both live with epilepsy. Their journeys, though distinct in their experiences, intertwine in a narrative of resilience, family support, and the pursuit of normalcy amidst the challenges posed by the condition.

Jacob’s journey with epilepsy began at the age of 12, a diagnosis that wasn’t entirely unfamiliar due to his family history.

“When I had my first seizure, I woke up in the back of an ambulance with no idea what was going. Not until much later did I recall my last memory being dad riding off in front of me on a bike ride. Only to be told that I had actually ran up the back of him and caused us both to crash with me convulsing in an ants nest – an unfortunate spot to land.”

Jacob’s uncle’s experience provided a faint roadmap, but the reality of living with epilepsy was still full of uncertainties. Tonic-clonic seizures became a recurring part of his life, disrupting moments unexpectedly and instilling a constant vigilance. Despite the hurdles, Jacob found solace in the unwavering support of his family and friends. Their understanding and empathy helped alleviate the burden of anxiety and fear that often accompanies epilepsy.

“The care of my parents, siblings and supportive friends made it easier to cope with. They were always mindful of the situations we were in and any potential triggers.”

As he transitioned into adulthood, Jacob remained vigilant about managing his condition, mindful of the potential triggers and the ever-present possibility of a seizure.

“Even though I haven’t had a tonic-clonic seizure since I was 14 and consistently take my medication it has always loomed over me that it could still happen.”

Jacob’s journey served as a testament to resilience and adaptation, emphasising the importance of a support network in navigating life with epilepsy.

Oliver’s story, on the other hand, unfolded against the backdrop of developmental challenges and rare genetic conditions. Diagnosed with Global Developmental Delay and a spectrum of other conditions, including hearing loss, hypotonia, autism and intellectual disability, epilepsy emerged as an unexpected yet formidable adversary. At the tender age of 4, Oliver began experiencing seizures, initially mistaken for fleeting moments of distraction. However, as time progressed, the seizures intensified, casting a shadow over his once vibrant personality.

“On the morning of his first EEG, he had his first tonic-clonic. Seizure severity and frequency continued to increase and in time, multiple types of daily seizures would become normal place in our household.”

For Oliver and his family, each seizure marked a painful setback, erasing milestones and diminishing his quality of life. The journey was filled with trials – failed medications, agonising side effects, and relentless seizures.

“Oliver had acquired mitochondrial dysfunction which meant that the first medication he was put on wreaked havoc on his body. Already classed as non-verbal, he lost all of the words he did have, effectively becoming mute for the next nine months. The once smiling boy who we could get to laugh so easily became like an empty vessel of a person.”

Yet, amidst the despair, a glimmer of hope emerged in the form of a meticulously curated treatment plan. The adoption of a strict ketogenic diet offered reduction in the frequency of seizures and has resulted in a gradual return of Oliver’s former self.

“Given his love of food, this has not been easy on him or the family but it is a small sacrifice to give him some respite. It is still a full time job to have to closely monitor and try to control so much in terms of the environment we are in, the activities we are doing or the length we do things for to also try and minimise seizures. This does mean lots of events, activities or outings are cut short or missed out on altogether but we know it is for the best.”

Though challenges persist, the family remains unwavered, supported by a dedicated medical team and a resilient spirit that refuses to give in to adversity.

Beyond their personal journeys, Jacob and Oliver’s experiences stand for the importance of raising awareness and eliminating myths surrounding epilepsy. The Epilepsy Foundation emerged as a beacon of support, offering valuable resources and fostering connections within a community united by shared experiences.

“The Foundation supported us by providing reliable and accurate information on epilepsy as well as a way to connect to other people with shared or similar experiences.”

Through initiatives like Make March Purple and Walk for Epilepsy, Jacob and Oliver’s family advocate for visibility and dialogue, urging others to join the conversation and break the stigma surrounding epilepsy. This year, Jacob decided to dye his hair purple to help raise awareness and funds for the cause. Their message resonates with a simple yet powerful truth – epilepsy may be an invisible condition, but its impact extends far beyond the individual, shaping narratives of courage, resilience, and hope.

“It can be a very confronting condition for not only the sufferer but anyone who has to witness it. Be mindful of everyone’s emotional wellbeing. It can be an invisible disability.”

You can help us support people living with epilepsy, like Leah, by donating today. Visit fundraising.epilepsyfoundation.org.au/donation

 

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