My parents were not yet thirty when they found out they had two daughters with cerebral palsy, after a medical error in our incubators. One of us needed more care than the other. My twin sister, Mariana, had a 98% disability.
She was often called “a vegetable” by people who tried to convince us to give up on her, to “end the suffering”. We didn’t. For fourteen years we tested therapies, adapted routines and reinvented ourselves. I learned how many medicines she took at breakfast, and how feeding tubes work, long before school taught me the digestive system. I watched my parents fight constant battles with hospitals and with the government institutions that exist, apparently, to support families like ours. In real life, that support network is the carers: the arms that multiply when money runs short, the extra shoulder when exhaustion sets in.
Mariana never spoke to me. But she knew we were home by the bumps in the road, she loved the warmth of the dog who always came to her on the sofa, and she laughed when the house was loud. For fourteen years we made the most of her 2% and grew it as best we could. With only 2% of herself to give, she gave so much.
Losing her shaped me more than anything. She is with me in every big decision, and in my prayers when life gets hard.
From her I inherited resilience; with her I learned to give a voice to those who (almost) have none. I studied law to shake up structures and change minds, and I embraced the social sector, for every Mariana. And here we are.
Caring for Mariana taught me that we are capable of much more than the limits others try to draw around us.
Patrícia Condesso Founder