Kody Negus-Gordon was an avid soccer player until he suddenly became very ill. Doctors are trying to treat his condition on a daily basis, but there is no diagnosis and no cure. His family is frantically hoping for a miracle and sending out the message for help. They have set up a website to help raise money for medical expenses at http://togetherwise.org/campaign/kody. Gordon Tokumatsu reports from LA Children's Hospital for the NBC4 News at 6 p.m. on May 24, 2012.
Kody Negus-Gordon, 14, was a normal teenage boy – healthy, active, playing his beloved sport of soccer. Then suddenly, he finds himself in the battle for his life fighting a mystery condition.
On Dec. 28, 2011, Kody woke up with swollen ankles, which quickly spread to his hands and arms.
Within days, fluid had collected just outside of his lungs. Doctors say the body cannot absorb the fluid quickly enough. The condition is called Idiopathic Bilateral Pleural Effusion.
But there’s no diagnosis, and no cure.
“No diagnosis and just continuing testing,” said his mother, Karen Negus-Gordon. “There’s no end.”
His mystery condition is baffling teams of specialists at two major hospitals.
“We know how it’s formed, but there are a handful of possible reasons,” said Dr. Niurka Rivero, Chilren’s Hospital Los Angeles.
Kody has undergone dozens of procedures, surgeries, transfusions, minor and major operations, all of which have taken a toll on the teenager and his family.
While his mother said his illness has somewhat broken his spirit, Kody says he can’t give up the fight.
“It’s like watching your son just kind of slowly die in front of your eyes,” Karen said.
But doctors and Kody’s family hang on to hope.
“Somebody out there could know how to fix this,” Rivero said. “You know, I think that’s always a possibility.”
The family has set up a website to help raise money for Kody’s medical expenses at http://togetherwerise.org/campaign/kody, and they have posted Kody’s story on various Facebook sites.
“Finding the person or persons that could help him or fix him or cure him – that’s the goal,” Karen said.