Uncovering the signs can change the story
For many families, relentless seizures are clues that help uncover an underlying diagnosis—one that opens up a community of support, connections to foundations, different treatment options, and more. In this section of the site, we share candid stories from families who found a diagnosis. It wasn’t always easy, but they never gave up hope to get the answers they needed.
Lili’s story | From irritability and infantile spasms to a Lennox-Gastaut syndrome (LGS) diagnosis
Lili was 6 months old when she was diagnosed with seizures. She was first diagnosed with infantile spasms, and then it transitioned into LGS at around 4 years of age. In this video, Lili’s mom, Natalie, shares their diagnosis journey.
Zora’s story | How treatment changed after receiving a diagnosis of Dravet syndrome
Finding the right diagnosis can help you understand your child better, including certain behaviors and treatments, just like with Zora’s story.
Brynleigh’s story | From an angel feather beauty mark to tuberous sclerosis complex
Brynleigh’s mom, Lauren, had to trust her motherly instincts when fighting for a diagnosis for her daughter. She shares their story in this video.
Have you started the conversation with your doctor?
While everyone’s diagnosis story is different, many started by trusting their instincts and having a conversation with their doctor. Knowing what questions to ask and how to explain the signs you are seeing is the first step to getting a more specific diagnosis.