On the playground, 6-year-old Tucker and 3-year-old Gauge play like normal boys. But they both have a very abnormal disease called Hunter's Syndrome.
Hunter's Syndrome is a genetic disease that causes damaged cells to build inside a child's body. It's so rare, only 220 children in the United States have it. The disease is characterized by distinct physical features and behavioral issues. "They're really strong for their age, really mean," said Tucker's mom Casey Lowery. "Instead of playing with toys, he'll throw them."
Gauge's mom Necole Brannen, has the same problem. "We go into stores and you have to get him chips or something, just to keep him occupied," she explained. "Or else he'll kick and scream and hit."
But Casey and Necole cherish trips with their sons to the park because they don't happen very often. Hunter's Syndrome weakens Tucker and Gauge's immune systems, making them susceptible to viruses and colds. Sadly, there is no cure for the disease, it is terminal. "I was floored, just devastated," said Necole.
Necole and Casey just recently met and rely upon each other to help them deal with their sons disease. While there is no cure, there is a treatment for Hunter's Syndrome. The trouble is they'd have to travel to Atlanta or out of state for it. Necole and Casey's mission is to get that new treatment for their sons closer to home. "They deserve this treatment and they deserve to be able to be healthy, just like the rest of these kids and any other person," said Necole.
While the treatment won't cure the two boys, it will give them a chance at a longer life. "I just want him to live a long, happy life, like the rest of us," said Casey. "And hopefully the treatment can do that."
Right now, both boys are being treated at the Medical College of Georgia in Augusta. The hospital has petitioned a second time for approval in treating Tucker and Gauge. The families should know by the end of the week if they will get the go-ahead for treatment.