Madison O’Loughlin

I’m taking part in Walk for Epilepsy because...

Charlie's Journey: A Story of Resilience

Charlie’s journey began on a magical Christmas night in 2023, a night that was meant to be filled with joy and family celebration. Instead, it marked the beginning of an unexpected and challenging path. Just at 17 months old, Charlie experienced his first seizure, a moment that transformed our lives and set off a series of events that would lead us to the Royal Children’s Hospital.

The first half of January was spent in the hospital, where we faced uncertainty and fear. As doctors ran tests and evaluations, we clung to hope while being engulfed in concern for our little boy. It was during this challenging time that Charlie received a diagnosis that few parents could ever imagine: he was diagnosed with a rare genetic disorder resulting from a misspelling of the KCNA2 gene.

The implications of this diagnosis have been profound. Charlie faces significant challenges, including ataxia, which affects his muscle control, and global developmental delay. Most notably, his condition comes with generalized epilepsy, which has had the most significant impact on both his life and ours. The unpredictability and severity of his seizures pose ongoing challenges that we are learning to navigate together as a family.

Despite these difficult circumstances, Charlie has shown an incredible spirit and resilience. He is our little superstar, bringing light into our lives even on the darkest days. His laughter, smiles, and determination to engage with the world around him serve as constant reminders of the strength he possesses.

In light of the challenges we face, we are forming a fundraising team in Charlie's honor. This initiative is not just about raising funds; it’s about creating a community of support for individuals living with epilepsy and rare genetic disorders like Charlie's. Through our fundraising efforts, we aim to raise awareness about epilepsy, promote understanding, and provide resources for families traversing similar journeys.

Our mission is rooted in hope. We hope to fund research that could lead to better treatments and, potentially, a cure. We hope to share Charlie’s story, shedding light on the realities of living with epilepsy and the importance of early diagnosis and intervention. Most importantly, we hope to connect with other families, advocates, and individuals who understand the weight of this experience.

The path ahead will undoubtedly bring challenges, but with the support of our community, we believe we can make a difference—not just for Charlie but for everyone affected by epilepsy. We invite you to join us in this important endeavor, supporting our initiatives through donations, participation in fundraising events, or simply by spreading the word.

Together, we can create a brighter future for children like Charlie, raising awareness, and empowering families. Charlie’s journey is just beginning, and with each step forward, we march toward hope, support, and the possibility of a better tomorrow. Thank you for being a part of this journey with us.

Tom (dad), Madison (mum), Brody (brother) & Charlie