Family seeks help for son in China

January 4, 2008 4:09:25 PM PST
A Bucks County family will be heading to China next week to get treatment for a deadly neurological disease that is slowly killing their young son.Curtis Anthony's parents have watched their 5-year-old quickly deteriorate since he was diagnosed with Batten Disease last April.

"He's missing an enzyme which is needed to break down toxic build up in his brain cells," Donna Kapper, Curtis' mother said.

The degenerative neurological disease is causing him to go blind. He can no longer, eat, walk or speak.

The disease is usually fatal by age 12. When Curtis was not selected for the only clinical stem cell therapy trial reportedly being done in the U.S. to treat Batten Disease, the Dublin couple found a hospital in China that would do it.

"It's hope for us," Paul Anthony, Curtis' father said.

"We knew it's not a cure, but we hope it will slow or stop progression of this disease," Donna Kapper said.

"On the first of possibly three trips, doctors will inject stem cells into Curtis' brain during an eight week stay in Beijing. Each trip costs about $50,000 dollars.

Mom's friend Ellen determined the best way to raise the money was to get one dollar from 50,000 people. She launched an e-mail campaign to do it.

So far 900 people from 33 states and three countries have donated $58,000 for Curtis' treatment.

"If we can give that to him right now and give him hope for the future, then what a gift," Ellan Kozac said.

Curtis' grandmother, Nancy, will accompany her daughter and her oldest grandson to China on Monday.

"We're hoping for so much, to hear him laugh again," Nancy Kapper said.

Curtis' family hopes the controversial stem cell treatment will be a lifeline that buys him more time while scientists seek a cure.

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