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.
Click here to read the complete article
Ciara Long ~ Narratively via Salon.com ~