2015 Family Advocacy Day Hero -- Rene'e
Rene'e is a 19-year-old college student focusing on becoming a social worker for people with chronic, rare and terminal illnesses. She is also battling a number of illnesses, including mitochondrial disease, Ehlers-Danlos syndrome and dysautonomia, all while dealing with multiple organ failure, resulting in her being on a ventilator. Rene’e is using her life and personal struggles to educate and promote awareness for her illnesses. Public knowledge about any of her illnesses is very low, but she’s hoping to be a voice of change.
Because of the rarity of her combination of illnesses, Rene’e travels from her home in Indiana almost seven hours each way for treatment at Toledo Children’s Hospital in Ohio, where she has connected with doctors who specialize and understand her issues. She believes that when you are given a diagnosis and there is no treatment or cure, if you’re lucky you will find a doctor to listen and help guide you through the inevitable.
You can follow her journey of awareness on her Facebook page, “Prayers for Rene'e.”