Patient Stories

PCDH19-Related Epilepsy: Dunn Family

Dee and Rich initially believed their daughter Tessa was missing milestones and experiencing frequent, short seizures. A 24-hour EEG confirmed she was having over 100 daily seizures and her PCDH19 diagnosis came soon after.

Tessa is unable to communicate verbally and her current medication regimen has not stopped her seizures. The Dunns lean on the PCDH19 Alliance for support and wisdom from other families. They hope that the future brings reliable treatment options for Tessa and more understanding of the rare disease community.