My name is Estelle Kernel, and I am reaching out to share the personal journey of my son, Malkiel DeMars, and myself, as we navigate the challenges and triumphs of living with epilepsy in Canada.
Our Journey Begins: Four years ago, my world changed forever when Malkiel, then an infant, was diagnosed with epilepsy. As a new immigrant from Africa, facing this challenge without the support of extended family, in a health system that felt complex and sometimes unwelcoming, was daunting. The journey was compounded by cultural misunderstandings and the stigmatization of epilepsy within our community, which left us feeling isolated and misunderstood.
Facing Challenges Head-On: Our path has been fraught with obstacles, from navigating the Canadian healthcare system to confronting societal biases and stigmatization associated with epilepsy. The lack of cultural sensitivity and the feeling of dismissal we often encountered added layers of difficulty to our already challenging situation.
Finding Support in ESWO: In our darkest times ESWO has been a guiding light. Your organization has provided us with more than just resources; you’ve given us a community and a sense of belonging. The seizure alert systems and support services you introduced us to have been instrumental in improving Malkiel’s safety and our overall quality of life.
Our Message of Hope and Solidarity: Through all the challenges, Malkiel and I have found strength in each other and in the support of communities like ESWO. We want to express our deepest gratitude for your unwavering support and for the invaluable resources you’ve provided us. It is my hope that by sharing our story, we can help illuminate the path for others facing similar challenges and contribute to a more understanding and supportive community for those living with epilepsy.
A Call to Action: Let us continue to work together to dismantle the barriers and stigmas surrounding epilepsy. Together, we can create a world where every individual and family living with epilepsy feels supported, understood, and empowered.
Thank you once again for everything you do. Your support has been a beacon of hope in our lives, and we are forever grateful.
Warm regards,
Estelle Kernel & Malkiel DeMars