June 29, 2005
By Kara Finnstrom
We often hear of children fighting rare diseases. The experience their parents all seem to share is the heartbreaking frustration of watching a child lose the battle against an illness nobody knows much about. Now the story of one such family facing a condition with no known cure.
His body is shutting down. Robert can no longer lift his head. He can't eat. And he can't see.
His mom, Alice, is doing everything she can to reach back,
It's a painful story for me to hear, one Alice says most people don't want to know.
Alice has not only been shunned by neighbors and friends. She's also had to fight for answers about what's making Robert sick.
But even the ultimate medical diagnosis of Batten's Disease left them and their pediatrician puzzled. Batten's is a genetic disease no one knows how to cure. Alice desperately wants more awareness, more research, but she says everyone she contacts has the same response.
Robert's nurse has seen Alice's fear and frustration before.
Alice urges other parents like her to turn to the internet and find support groups. She's carefully documented all she's learned about Batten's Disease.
Her hope -- her family's struggle may some day ease the pain of someone else.
Researchers estimate that Batten's Disease is found in four of every 100, 000 live births.
Click here to find out more about rare diseases