Rare disease strikes Sun Valley Teen
A story today in the Daily News follows how a Sun Valley family is struggling to understand Batten disease, a rare, genetic disease that is undetectible in newborns, but can emerge as a child gets older. Daniel Bothuel's mother became frustrated by doctors at the embattled Martin Luther King, Dr-Harbor Hospital, who couldn't give her a diagnosis as to what her son had. She learned about it only this May, from a heroic nurse at Olive View Medical Center in Sylmar, who pieced together all the symptoms from Daniel's medical files.
From the story:
Daniel was born with Batten disease, an inherited and fatal neurological disorder that affects just two to four out of every 100,000 births. The initial symptoms are subtle, appearing during early childhood as vision, behavioral, personality or learning problems.For Daniel, the signs surfaced after he was old enough to run in the snow in his family's native Detroit, to play ball with his siblings and to chatter to his mother.
"When I look at these old pictures, I think, `That's Daniel,"' Bothuel said. "It hits me hard to see him like this."