Middle Schooler battling rare disease holds party

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GEORGETOWN, Del. - An annual event is taking place in Georgetown Salisbury to help a local 7th grader facing a rare disease. 

Chandler's Chance 5th Annual Christmas Palooza For Cystinosis will include hay rides, fire truck rides, a photo booth, and a guest appearance from Mr. and Mrs. Clause.  The event, attended by hundreds every year, is a way to collect crucial funds to battle the disease, that has struck Chandler Moore.

"It gives me a good feeling .  At school they're all talking about ready for your event, ready for your event.  I'll be there, can't wait to see you, stuff like that.  So I get pretty excited."

For Chandler, the only Delawarean with the rare disease, it gives him a chance to throw a party with friends.

"He's really kind of like any other kid.  When he's around all of his other friends he does exactly what they do.  It's just that when he's home he has to take mounds and mounds of medication," said Clinton Moore, Chandler's dad.

This year, the Christmas Palooza is welcoming a second pharmaceutical sponsor.

"Leadiant and Horizon Pharma have sponsored the event this year.  Horizon this is their fifth year sponsoring it, Leadiant just joined us this year, so we're real excited about that," said Clinton.

Thanks to breakthroughs in the last decade, Chandler now has three medications to help fight the disease.

"Ultimately those drugs were created because of events like this held all over the country. People raising money and donating it to the organizations that dump it right back into research.  That's the only way you can make things happen," said Clinton.  "We still need a lot more research to be done, better medications, and a lot more advocating and educating."

Last year's event attracted over 500 to the Moore's home in Georgetown.  Chandler says he appreciates the outpouring of support shown by the community.

"It feels good, just knowing that there are people out there who actually care," said Chandler.

The event takes place from 5:30 to 9 p.m. at 24062 Peterkins Rd.

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