Emmy Anderson and her daughter Wren sharing a happy moment

When your child is sick with a rare condition that can’t be named, the search for an answer can seem frustrating and hopeless. For Kirk and Emmy Anderson, navigating the lengthy diagnostic process for their daughter, Wren, was something they endured with the hope that an answer would eventually come.

By about 6 months of age, Kirk and Emmy noticed that Wren was not meeting her developmental milestones. After a febrile seizure led to a stay in in Seattle Children’s Neonatal Intensive Care Unit (NICU), they received the news that a brain MRI showed Wren had a decrease in the amount of white matter in the brain, as well as a fluid filled sack growing between her brain and spinal cord. Despite the findings, doctors didn’t yet know what was causing these issues to arise.

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