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Local Boy Plans To Fight Rare Disease Overseas
07 January 2008, by Lesley Van Arsdall

A Bucks County boy battling a rare disease is taking a trip across the globe to continue his fight for survival.

5-year-old, Curtis Anthony is leaving for China Tuesday morning to get treatment for a rare neurological disease that is slowly killing him.

"Basically he's missing an enzyme needed to break down toxins in the brain so that you slowly die," said Curtis' mother, Donna Kapper.

Curtis first started having seizures when he was three, but was not diagnosed with Batten Disease until last April and his condition has deteriorated quickly.

"He doesn't talk, walk with out complete support and he's fed with a feeding tube. I just thought we'd have more time then from April we've lost so much," said Donna.

In China, Curtis will be the third patient at the hospital ever to receive injections of stem cells, aiming to slow the progression of the disease. A treatment involving stem cells is only in clinical trials here in the U.S.

"If we have a good outcome maybe, it will give them a good reason to use stem cells here," said Paul Anthony, Curtis' father.

Now nearly blind, his only source of fun comes from a hot tub donated by the Make a Wish Foundation, but his parents are hopeful after his treatments they will get to hear something they haven't in a while.

"Hearing him laugh. We're missing him smile ," said Donna.

Curtis's trip to China will be the first of three, each costing fifty thousand dollars.

To find out how you can make a donation go to curtisanthonyshope.org.

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