Teodora and Adela are painting purple butterflies and making purple bracelets and ribbons – beautiful!
They take their children to Constanta, to ride a gold-mane horse – how happy!
Teodora and Adela are mothers of children affected with Dravet, a rare and untreatable form of epilepsy. They had to reinvent their lifestyle to keep their children alive and relatively safe and to help other families faced with this merciless syndrome.
Purple butterflies, bracelets and ribbons help spread their message. Going to Constanta for special therapy helps their children come closer to a normal life – the one we usually take for granted.
Together with the neuro-paediatrician Magdalena Sandu they
are The Association for Dravet and Other
Rare Epilepsies. Their cause is so difficult because this syndrome is
impossible to diagnose in Romania and the authorities don’t take it into
consideration. Families with children affected by Dravet - around 40 in Romania - lack access to proper
treatment or, even worse, are ashamed to make their voice heard.
We, in PwC run4fun Club, are proud to share their story. We believe in people who find strength in their fragility. We admire Teodora’s and Adela’s restlessness in lobbying the authorities, in talking openly about the condition that affects their dearest ones, in educating and encouraging families to fight for a normal life and social inclusion.
