To Save Her Daughter, This Mom Became a Medical Marijuana Pioneer

When her infant developed seizures, Margarete de Santos Brito went to court in Brazil for the right to grow the only medicine that worked. Now she’s helping others do the same.

Photos by Lianne Milton

It happened for the first time just 35 days after Margarete de Santos Brito brought her daughter Sofia home from the hospital. Laid on the sofa in their home in Rio de Janeiro, Sofia’s little arms rose up to shoulder height and tremored, flicking between strange angles.

The next two and a half years were punctuated by innumerable doctors’ appointments, hospital visits and tests before Sofia was finally diagnosed. Her epileptic fits turned out to be a symptom of an incurable genetic disorder called CDKL5. Only one other case had ever been diagnosed in Brazil. Over the years, Brito tried every medicine that doctors prescribed for Sofia. But the myriad of anti-convulsive medications had mixed success in reducing the severity and frequency of epileptic fits. Many weren’t particularly effective at all, and came with distressing side effects like partial loss of sight.