In May 2011, I spent a day with Nila a12 years old living with Ullrich Muscular Dystrophy, an EXTREMELY rare form of MS. She is the only person in SC that has it, and as of 2005, 1 of only 96 cases in the world. Her mother, Christie is a single mom and sole caregiver of Nila and, her own mother Bernice who recently had a stroke-making her both of their caregivers. My aunt Dana, a surgical tech who works with Christie, told me about the family’s situation and asked if I could do a video for them in hopes that they could secure some much needed work on their home. This was and has been a chance for me to do something that could potentially improve the quality of life for their family and bring some serious awareness to the way SC treats their disabled citizens. The state of South Carolina provides little to no assistance to caregivers and their families.
While this project basically fell into my lap, I tried to treat it with the same care that i do with my other work. Its rough but i think it gets the message across. *i only spent 1 1/2 hours with the family before heading back to Philly