A cause we care about
A tiny patch of brain tissue that grew in the wrong shape before our daughter was even born. Small in size. Vast in consequence.
Focal Cortical Dysplasia is a congenital malformation of the cerebral cortex — a small region where neurons developed in the wrong shape and organisation. Everywhere else, the brain is completely typical. Type IIb is the “textbook” surgical variant, defined by giant misshapen neurons and pale “balloon” cells, and now understood as an mTOR pathway disorder that begins in a single cell during early brain development.
It is one of the most common causes of drug-resistant epilepsy in children — and one of the most surgically curable, when the lesion can be precisely located and safely removed.
FCD Type IIb is a rare condition. Epilepsy itself affects around 1 in 200 children; only a small fraction of those cases are FCD, and Type IIb specifically is rarer still — typically only surfacing at specialist paediatric epilepsy surgery centres. It is estimated to affect on the order of just a few children per 100,000 — and many cases go years without being correctly diagnosed because the lesion is so small that a standard 3T MRI can quietly miss it.
Our daughter Phoebe’s first visible seizure came at the end of May 2026 — a sudden, unmistakable moment that changed everything overnight. Within days she was under the care of Hospital de Santa Maria in Lisbon — a member of the ERN EpiCARE European Reference Network for rare and complex epilepsies — where the paediatric team is guiding us through diagnosis, medication and what comes next.
We are sharing this page so that families in the same position know they are not alone, and so that anyone who ends up here after typing “FCD Type IIb” into a search bar for the first time has one more voice telling them: keep going, ask for the specialist centres, and there is a great deal that can be done.
Written from a family perspective, not a clinical one. Nothing here is medical advice — please speak to a paediatric neurologist for anything treatment-related.