After 32 years Anthony Stokley is used to the looks he gets in public. “It's hard to see your kid go through it,” his mom Rebecca Buhler said.
Anthony was born with neurofibromatosis. There are two types and he has them both, which is extremely rare.
The disease causes tumors, hundreds of them, to grow all over Anthony’s body.
His face is most affected. “Two days ago he was at the E.R. The tumor gets so heavy it splits his face open,” Rebecca said.
Life has not been easy for Anthony. “Today people still stare at him and gawk at him.” That’s why Rebecca continues to share his story. “We're hoping people are educated on it for one thing.”
Anthony's story might sound familiar. Eyewitness News talked to him back in 1997. Then he was recovering from his 58th surgery. Now he prepares for the 90th and it will be a major one.
Anthony has spent his life the hospital. Some surgeries are minor, but others can last up to 20 hours and cost hundreds of thousands of dollars. “He takes five doctors in the surgery room.”
The tumors took his speech and eventually doctors were forced to remove one of Anthony’s eyes. “They removed it because he had a tumor the size of a softball.”
The tumors and surgeries have been hard. What his mom wants most is for people to see her son for who he is, not what he looks like. “That's what I wish for Anthony, is people treat him normal because that's how he wants to be treated.”
Anthony's mom says they were once kicked out of a pool because workers thought the disease was contagious. It's not. It's genetic and his little brother was also diagnosed. He died when he was just five months old.
If you would like to help Anthony's family you can make donations at any Bank of the West location under Rebecca Buhler's name.