Matt Schneider of Alpharetta was diagnosed with a rare kidney disease at age 11 and has received four kidney transplants. As a way of showing appreciation and raising awareness, he volunteers annually at Camp Twin Lakes, which serves families whose children are ill, disabled or have other challenges.
His health won't allow him to attend camp this year, or the Atlanta Guns N' Roses concert tonight , which he'd been looking forward to.
"This would have been his 26th year out at camp," said Laura Schiener , who coordinates special events for CHOA patients. " He is an incredible person that is so loved and appreciated here at Children's and within the camp community."
She struck out trying to figure out a pre-show GNR meet and greet. Apparently Axl & Co. don't do that sort of thing.
Plan B: Trying to work out a visit from someone from "The Walking Dead," his favorite show.
Schneider was born with Eagle-Barrett syndrome, which occurs in one of every 30,000 to 40,000 births. He has no frontal abdominal muscles, so he can’t physically sit himself up without rolling or using his arms. The diagnosis has affected his hips; both are dislocated. He walks fine but refers to his stride as a waddle. He has scoliosis and lordosis, which means his spine curves to the side and it also curves inward. Chronic renal failure is common with Eagle-Barrett syndrome.
“I’ve had 20 surgeries, give or take,” Schneider told the AJC earlier this year. “Beyond my transplants, I’ve had bladder surgery, knee surgery, fistula repair, the list goes on. Though I believe the diagnosis has made me a better person, it’s not always easy."
Despite his challenges, Schneider keeps a positive outlook.
"Being different is hard," he said. "Because I look different, people know something is up. I try to be open and share when I’m asked questions, because I hope my story will persuade them to be an organ donor one day.”