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Last summer, our world shifted when our youngest son began experiencing sudden seizures, losing mobility, and the ability to communicate. Prior to this, he was a thriving toddler—walking and speaking by 13 months, engaging with others, and expressing emotions. Then, seemingly overnight, he regressed. His eye contact faded, his words vanished, and his once vibrant spirit dimmed.
We spent four months in the hospital, including an airlift to a specialized children's facility, where he was diagnosed with SCN2A loss-of-function (LOF) syndrome. This rare genetic condition disrupts brain sodium channels, leading to severe seizures and developmental challenges. Despite trying seven different medications, we found seizure control through the medical Ketogenic diet, complemented by two additional medications.
With his seizures now managed, we've assembled a dedicated neuro team—therapists, speech, ABA, and occupational specialists—who work with him daily. Children with SCN2A LOF have the strength and potential to learn, but they require strict dietary regulation, gut health management, and intensive, hands-on therapy.
We are deeply grateful to join the SCN2A Foundation's board, advocating tirelessly for a cure and supporting other families on this journey. Our son continues to face challenges, including hospitalizations due to keto-related side effects, viruses, and the underlying effects of SCN2A LOF. But we remain hopeful and committed to fighting for his future.
Born in California and raised in New Zealand, I developed a deep passion for photography and design, influenced by the stunning landscapes and architecture of both countries. This passion led me to pursue a career in graphic design, which I further honed after returning to California in my late teens.
In 2015, I moved to New York to continue my career in design, while also building a strong client base in graphic design. It was during this time that I met my husband, a Canadian, and we decided to settle in Victoria, Canada, where we now raise our two young boys and daughter.
But my journey took an unexpected turn when my son, Easton, was diagnosed with SCN2A a sudden onset of seizures at 18 months. Over the course of three months in the hospital, we tirelessly trialed medications, but it was my entrepreneurial mindset and determination to find alternative treatments that drove me to advocate for new approaches. I fought for Easton to try the keto diet, which became a turning point in his treatment. Throughout this experience, my dedication to advocating for him didn’t stop, and I was determined to raise awareness about his condition.
Easton has since become an active part of numerous fundraising efforts helping raise funds for medical research and treatment. His story is a testament to perseverance, and I continue to push for innovative solutions that could improve the lives of others facing similar challenges.
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Last summer, our world shifted when our youngest son began experiencing sudden seizures, losing mobility, and the ability to communicate. Prior to this, he was a thriving toddler—walking and speaking by 13 months, engaging with others, and expressing emotions. Then, seemingly overnight, he regressed. His eye contact faded, his words vanished, and his once vibrant spirit dimmed.
We spent four months in the hospital, including an airlift to a specialized children's facility, where he was diagnosed with SCN2A loss-of-function (LOF) syndrome. This rare genetic condition disrupts brain sodium channels, leading to severe seizures and developmental challenges. Despite trying seven different medications, we found seizure control through the medical Ketogenic diet, complemented by two additional medications.
With his seizures now managed, we've assembled a dedicated neuro team—therapists, speech, ABA, and occupational specialists—who work with him daily. Children with SCN2A LOF have the strength and potential to learn, but they require strict dietary regulation, gut health management, and intensive, hands-on therapy.
We are deeply grateful to join the SCN2A Foundation's board, advocating tirelessly for a cure and supporting other families on this journey. Our son continues to face challenges, including hospitalizations due to keto-related side effects, viruses, and the underlying effects of SCN2A LOF. But we remain hopeful and committed to fighting for his future.
Born in California and raised in New Zealand, I developed a deep passion for photography and design, influenced by the stunning landscapes and architecture of both countries. This passion led me to pursue a career in graphic design, which I further honed after returning to California in my late teens.
In 2015, I moved to New York to continue my career in design, while also building a strong client base in graphic design. It was during this time that I met my husband, a Canadian, and we decided to settle in Victoria, Canada, where we now raise our two young boys and daughter.
But my journey took an unexpected turn when my son, Easton, was diagnosed with SCN2A a sudden onset of seizures at 18 months. Over the course of three months in the hospital, we tirelessly trialed medications, but it was my entrepreneurial mindset and determination to find alternative treatments that drove me to advocate for new approaches. I fought for Easton to try the keto diet, which became a turning point in his treatment. Throughout this experience, my dedication to advocating for him didn’t stop, and I was determined to raise awareness about his condition.
Easton has since become an active part of numerous fundraising efforts helping raise funds for medical research and treatment. His story is a testament to perseverance, and I continue to push for innovative solutions that could improve the lives of others facing similar challenges.
Vlad Magdalin
