Delaware 8 Year-Old Battles Rare Disease, Raises Awareness - 47 ABC - Delmarva's Choice

Delaware 8 Year-Old Battles Rare Disease, Raises Awareness

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Chandler Moore Chandler Moore

Georgetown, DE - Chandler Moore is a shy, but charming eight year-old, who, like many his age, enjoys sports and video games.  Unlike other children - or adults for that matter - he has a rare affliction. 

Chandler suffers from Cystinosis.

In fact, only about 2,000 people world-wide suffer from the genetic disorder, 500 in the United States, and just one in the state of Delaware: Chandler.

When he was diagnosed at 10 months, Chandler's parents didn't know what to think, "we had no idea what Cystinosis was."

The genetic disorder causes a build up of the amino acid cystine, throughout the body.  Without treatment, it can cause irreversible organ damage, and the creation of painful cystine crystals, especially in the kidneys and corneas of the eye.

Chandler suffers from stage three kidney disease.

Round the clock treatment is a part of life for this family of three, but Chandler's dad, Clinton Moore, says they take it all in stride "it's not something we have to deal with, he says, "we get up, he takes his medicine and move on."

And there is a lot of medicine.  Chandler takes an eye drop every hour he's awake to stop the crystals from forming, and 64 pills a day, many of them vitamin supplements to replace lost nutrients, as one of the symptoms of Cystinosis is very frequent urination.
     
"It's hard to explain to an eight year-old, that kind of disease when we're still learning," says his mother Annie.

One thing that's helped Chandler understand is a children's book about Cystinosis, which was mailed to the family earlier this year.  Annie says when they first got the book, Chandler read it every night, and couldn't wait to tell his parents what he learned.

A third grader at Georgetown Elementary, Chandler brings his book to school sometimes to teach his friends about the disease, and now, the family wants to help spread awareness with a fundraiser.

The Moore's are inviting the community to their home for the Chandler's Chance...A Christmas Palooza for Cystinosis.  They'll have thousands of holiday lights, live music, fire truck rides, and hot chocolate, all to raise money for Cystinosis research..
     
"It was actually Chandler's idea," says his dad Clinton.

With a smile on his face, Chandler says "I decided that all of the money we make out of hot chocolate to give it to the Cystinosis network."

"I am so proud of him.  You know, he said 'let's donate the money to the research for kids who don't have it mommy."

"Chandler's Chance...A Christmas Palooza for Cystinosis" fundraiser is scheduled for December 7th, at the Moore's house at 24062 Peterkins Road in Georgetown, DE.  Anyone with questions is asked to call Clint Moore at 302-841-7603.

While it is free, they're asking for donations, all of which will be given to the Cystinosis Research Network.

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