Support Kali's Fight Against Dravet Syndrome

Dear Friends and Community,

We are reaching out to share the story of our precious Kali, who has been courageously battling Dravet Syndrome since she was just 3 months old. Now 9 months old, Kali faces this life-limiting and severe form of epilepsy every day. Dravet Syndrome, caused by a genetic mutation in the sodium ion channel, results in frequent and prolonged seizures, intellectual disability, and challenges with behavior, mobility, speech, language, eating, and sleep. Despite being on three anti-seizure medications, Kali continues to experience severe seizures requiring emergency medical care. Her most recent and longest seizure lasted nearly two hours.

Kali's condition puts her at constant risk of life-threatening seizures and SUDEP (Sudden Unexpected Death in Epilepsy), necessitating 24/7 monitoring. In her short life, she has endured over 20 prolonged seizures and multiple types of seizures, leading to numerous hospital visits and extended stays.

There is currently no cure for Dravet Syndrome, but we are hopeful as we seek treatment through a clinical trial in Fort Worth, Texas, which explores gene therapy as a potential cure.

We are seeking your support to help cover the costs of seizure monitoring devices, specialized equipment, and care for Kali. Additionally, funds will help with unexpected medical bills and travel expenses to the U.S. Any remaining funds will be placed in a disability bank account for Kali. If, by a miracle, this is not needed, we will donate the leftover funds to the Dravet Canada Foundation in her name.

Kali is a happy, bright, and sweet baby who brings joy to everyone who meets her, especially her big brother Levi. Your contribution, no matter the size, will make a world of difference in Kali's fight against Dravet Syndrome.

Thank you for your kindness and support.

With heartfelt gratitude,

Sondra, Matt & Levi