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3-year-old more than meets the eye

Khloey Allen likes xylophones.  She also likes Legos, race cars and loves the family dog, Bella.

Khloey is a typical three year old, except for one, very real, very tragic difference.

"She has a rare disorder that's called Pearson Pancreatic Marrow Syndrome," says Khloey's mother, Arwon Allen.  "For Khloey, her main way of showing it is bone marrow failure, so she produces no blood of her own.  It just erupts in the DNA out of nowhere."

And, for Khloey Allen, that's a death sentence.

"They generally give you between the ages of 3 and 5," says Arwon, "so it's a terminal prognosis."

Pearson's is rare, with only 80 cases diagnosed since the disease was first discovered in 1979.

Khloey looks fine, especially when her family goes to a Braves game, thanks to tickets provided by the AFLAC Children’s Cancer Center.

"There was a woman with her daughter, and the girl was in a wheelchair and clearly was sick," Arwon says.  "She tapped me on the shoulder and asked me which of my kids was sick, because they all looked fine. But, of course, Khloey is not. That's thing.  Khloey looks like any other kid, but they don't see her numbers.  They don't realize her prognosis is worse than anyone else's."

Arwon and her family live in Floyd County, near Rome, but she and Khloey travel to AFLAC at least once a week for treatment.  During that time she tries to forget about reality, but, of course, she never can.

"I was one of those parents who hears stories and wonders what I would do, and thinks 'I feel so bad for them,' or 'I feel so sorry for them,'" she says.  "And now that I'm in this situation, you have good days and bad days and, sometimes, you have to just take it minute by minute."

The only bright spot for the Allen family is a doctor in Boston who is researching Pearson Pancreatic Syndrome.

"He told us, flat out, I can’t help your child," Arwon says.  "But, by her being a part of my clinical trials, one day it will be able to help another child."

For Arwon, that does make a difference.

"It helps because we know her illness won't be in vain," says Arwon.

When you look at Khloey Allen you see a typical 3 year old, who plays and laughs and seems just fine.

When you learn about Khloey Allen you shake your head and wonder why.  That's a question that, for now, has no answer.

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