Over the past year and a half, Shay (4) began experiencing seizures. What initially appeared to be epilepsy has since led to the diagnosis of a very rare autoimmune neurological disease called Rasmussen’s encephalitis. To help conserve the family’s emotional energy, we wanted to share this information here so they don’t have to explain this very complex medical situation repeatedly, and so our community can better understand how to support them. A brief overview of Rasmussen’s encephalitis: Rasmussen’s encephalitis is a very rare condition that primarily affects young children. It causes ongoing inflammation in one side of the brain. Because the brain controls movement, speech, and learning, this inflammation can lead to frequent seizures (often resistant to medication), weakness or stiffness on one side of the body, and changes in cognition or development. If seizures and neurological decline cannot be controlled, the typical course of treatment often requires removal or disconnection of one half of the brain to stop the seizures and protect remaining brain function. Timing is critical—if intervention does not happen quickly enough, some loss of skills may become permanent. This disease is far more complex than a short explanation can capture, but this gives you an idea of how much this family needs our attention right now. In Shay’s case, doctors were able to identify this diagnosis early—something I considered a true miracle. However, this has created a race against time. Her medical team is working tirelessly to control her seizures and preserve as much brain function as possible while preparing for brain surgery. Due to the frequency of her seizures and the risk of the disease spreading to the other side of her brain, surgery is unfortunately imminent. As overwhelming as this is to say out loud, both the family and her medical team believe this gives Shay the best chance at living life as fully as possible. Jessica and Johnathan, along with Shay’s sweet twin brother Tyson, have already endured so much on this journey. They have shown incredible strength and love while caring for Shay through every step, including quite a few hospital stays already. As they now enter an even more difficult chapter, I’m asking our Astra community to wrap our arms around this family and support them in whatever ways we can. As of this week, Shay’s seizure activity increased significantly, requiring admission to the ICU. She is currently under heavy sedation in an effort to calm the seizures. The coming days will be critical in determining whether her seizures can be managed until surgery or if the surgical timeline must move forward more urgently. Jessica and Johnathan continue to show remarkable strength, but no family should have to walk through something this rare, complicated, and frightening alone. I’ve created a Give In Kind page to help coordinate meals, support, and other ways to care for this family during this time. Please check back frequently as the family will know in the coming days and months what they need to be best supported. Shay is a ray of sunshine whose smile instantly lights up the room. Even while facing experiences no child should ever have to endure, she meets this confusing and restrictive journey with extraordinary bravery, resilience, and a bright, beautiful joy that shines through everything she does. Join me in surrounding Shay with love, strength, and hope as we support her to the other side of this wild medical rainbow. Thank you for holding the Decker family in your hearts and for showing up with the compassion that our sweet girl needs.