Her name is Bernadette Scarduzio, a 33-year-old from Drexel Hill. She is suffering from Charcot-Marie-Tooth disease, named after the doctors who discovered it.
"I am in a chair pretty much all day, it's hard," she said.
As seen in a preview video for the documentary, Bernadette has trouble walking. Her muscles are shrinking and she has pain in her legs and fingers.
She has a severe case of Charcot-Marie-Tooth Disease, or CMT. It's one of the most common inherited neurological disorders. It was named after the three doctors who identified it: Dr. Jean-Martin Charcot, his pupil Dr. Pierre Marie, and Dr. Henry Howard Tooth
Her father also had it and there is no cure.
"It's worse when its your kids, it's 100 times worse and knowing you gave it to her, well, you can just imagine," her father said in a preview of the movie.
But while Bernadette's father didn't like to talk about CMT, she became the spokesperson- telling people what it is and helping others also struggling with the disease.
Four years ago, she also opened up her life to film-maker Josh Taub. He says the documentary speaks to CMT sufferers and so many others.
"Because everyone struggles so this is something to get people to realize how important and precious life is and what to be happy with and what to really be upset about it," he said.
Bernadette has learned to accept her disease. She believes it was a gift from her father so that she could raise awareness and the hope for a cure.
"I feel like I was meant to do this with my life. I was meant to be here for this reason," she said.
They will be showing the documentary to family and friends this week at the Bryn Mawr Film Institute, then it will be submitted to film festivals.
For more on Bernadette's story and the documentary "Bernadette," visit: www.bernslife.com
For more information on Charcot-Marie-Tooth Disease, visit: www.hnf-cure.org/
