Eight-year-old Robert Owenby enjoys America’s greatest
pastime so much he took the time Friday to play one last game before a major
operation Sept. 11. Owenby was diagnosed with neurofibromatosis at 2 years old
and has undergone several surgeries since.
Owenby will be headed to Philadelphia for surgery to help relieve pressure and reconstruct areas of his skull and eye socket that have been damaged by neurofibromatosis and the multiple surgeries.
“A part of NF is that he doesn’t have really a bone behind his eye so they have to put a titanium mesh back there to keep his brain from coming up into the orbit of his eye. It is an extensive surgery,” said Wesley Owenby, Robert’s father.
Family and friends joined together Friday at Lakeview Academy to play baseball with Robert Owenby and to wish him well before his next surgery.
“Robert's favorite sport is baseball. He loves to play it, watch it and loves to play pickup games in the yard or organized sport. We wanted to do something ... we wanted to have a fun night,” said Carolanne Owenby, Robert’s mother. “He will have an eight-hour surgery and be in the intensive care unit for several days and in the hospital for several more.”
About 45 adults and children filled the field Friday night to play baseball alongside Robert Owenby.
“This is the only one we are going to get this year, so it’s lots of friends, family and friends that have become family,” Carolanne Owenby said. “Tonight is a fun night to enjoy getting to be a kid for a few more days. Tonight we wanted to thank the community that supports us and our strong boy.”
Wesley Owenby shared similar sentiments with his wife.
“He wanted to play fall baseball, but he couldn’t, so this is his fall baseball league,” Wesley said. “We really appreciate all the help, support and love we have gotten from the community. It is a big deal for them to give up their Friday night just for a little baseball game, so that is pretty cool.”
Causing tumors to grow on nerve endings throughout Robert’s body, Neurofibromatosis 1 is a genetic disorder that affects one in 3,000 children, according to the Children’s Tumor Foundation.
“It is a lot more common than you think. Different children present in different ways but it is a genetic disorder that currently has no cure and no effective treatments,” Carolanne said. “There are a lot of people in the background that have done a lot for us that dont expect or want anything from it. They just want to be here to support and hopefully one day find a cure.”
At about 8 months old, the Owenbys noticed puffiness behind their son’s right eye, believing it to be “some sinus problems.” To be safe, their doctor did an MRI. Wesley Owenby said it took years for an accurate diagnosis to be made.
Their family, including Robert and his sister Kinley, then moved to Philadelphia for treatment. There, Carolanne Owenby joined a racing team benefiting the Children’s Tumor Foundation.
“We do big fundraising events throughout the year. We want people, when they see the Children’s Tumor Foundation, to consider showing up for fun events, road races and different things to help us raise funds and awareness,” Carolanne said.
The Owenbys, along with family friend Tara Rogers, started Little Heroes of North Georgia, LLC.
“Our Little Heroes of North Georgia has raised over half a million dollars for NF research in the past five years so we are proud of that and proud to say that this community is the reason we have done that,” Carolanne Owenby said.Though Robert Owenby will not be able to play baseball for a while after his surgery, or go to school when they return from Philadelphia by late September, Wesley Owenby said that “there are a lot of kids that are worse off than Robert” and that “he is doing well.”