2014 Emily Rhyne – “Raising Cameron” These photographs are copyright Emily Rhyne and are used here by permission. They may not be used elsewhere without her permission. “You can’t have a testimony, if you don’t have a test,” 46-year-old Sarah Gamble says. Ten years ago, Sarah’s family was changed forever when her daughter became pregnant during her freshman year of college. From the start, Sarah, better known as “Memaw,” took in Cameron Powell, her daughter’s child, so that she could finish college. Weeks later, Cameron was diagnosed with Bartter syndrome, a rare kidney disease that UNC hospitals had not seen in over 30 years. Cameron’s round-the-clock needs resulted in him spending his first ten months of life in UNC Hospitals. During this time, precisely at the six-month mark, Cameron had a seizure, which caused an onset of cerebral palsy. “It was scary at first, but very quickly my entire family had a whole new perspective on life,” Sarah says. “We had really been looking out of the wrong lens.” For Sarah, Cameron’s first year of life was marked by transition across the board. Cameron quickly became her first priority. She quit her job, to be with Cameron, and her previously comfortable lifestyle—a $60,000 a year salary and middle class home—were both soon gone. As the hospital bills piled up, Sarah was forced to move into the Durham projects. Now that Cameron is ten years old, Sarah has been able to return to work full time and move them into their own apartment. Still, Cameron is her first priority. Cameron’s food and medicine are both ingested through a gastronomy tube. He has to wake up at least once during the night to eat, although he often wakes up multiple times. Even after ten years, Sarah says that the lack of sleep is one of the hardest parts. Cameron takes heavy medications three times a day, with Medicaid making this financially possible. Sarah says their family has been extremely fortunate to avoid the recent cuts made by N.C. Legislation. “Some days, I think, I can’t do this,” Sarah says. “This is crazy.” The long nights, full-time work, and frequent appointments have taken a toll on Sarah over the past ten years. To work on his motor development, Cameron attends physical therapy once a week at Abilitations in Raleigh. In January 2013, Cameron had back surgery to correct his scoliosis, which physical therapist Jessica Holmes says set back his progress towards walking a bit. Eight months ago, Sarah’s friend Kelvin Hodges moved in to help with Cameron. Kelvin and Sarah consider each other brother and sister, as they have been friends for over 20 years. “It’s alot. People just don’t know until you actually witness it and live it,” Kelvin says. “I just want him to take that step. I know he can do it.” It is possible for Cameron to walk in the future, but the trajectory is uncertain. Because both Sarah and Kelvin work during the day, Sarah was forced to find a caregiver who could assist them with day-to-day tasks. Brenda Fitzgerald, the new caregiver,prepares Cameron’s medications while Sarah starts the bedtime process. “Cameron’s my world and I’m his voice,” Sarah says. Cameron will go to grade school until he is 22 years old and then hopefully be able to live on his own. For now, Sarah and Kelvin’s lives will continue on, marked by their love and commitment to raising Cameron as they would any other child. Sarah says, “I have nothing to complain about.”
