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Tournament to benefit child with rare disease to get help from tourney

A softball tournament is being held May 1 to raise money for a family whose child suffers from a rare disease.

Joey and Jodie Key's younger daughter, Chloe, suffers from MPS III, or Sanfilippo syndrome. It is a rare genetic disease that prevents the body from recycling materials in cells, resulting in cells that do not perform properly.

Medical needs not covered by Medicaid, such as feeding tubes and diapers, teamed with the loss of work to care for Chloe, is placing financial burdens on the family. An account has been set up at Queensborough National Bank & Trust on West Hill Street in Thomson. Anyone wishing to donate money may do so at the bank.

"I'm so glad we live in Thomson," Mrs. Key said. "Every time I turn around, somebody is wanting to do something. My heart can't give enough thanks for this community."

When employees at Queensborough learned of the family's situation, they held a bake sale in the bank and raised more than $1,000.

Mr. Key's co-workers at McDuffie County Recreation and Leisure Services also wanted to help, and they organized a softball tournament. The USSSA- sanctioned tourney will have an open roster and is for men and women. Entry fee is $200.

"A lot of money has been put into having this tournament," Mrs. Key said. "We are so blessed by this community."

April's Bowtique and Camellia City T's donated T-shirts for all participants in the tournament and T-shirts to advertise it.

It's a Southern Thing donated trophies for teams and participants, and Jimmy and Dena's Body Shop made a donation.

Mr. Key said money raised over the amount needed for tubes will be sent to the National MPS Society for research for a cure.

Although the disease is genetic, symptoms do not begin until the preschool years. Mrs. Key said Chloe was diagnosed when she was 31/2 years old.

Affected children are restless and sleep very little, lose the ability to talk or communicate, and cannot be toilet trained.

Now 9, Chloe is in the third phase of the disease and can no longer walk. Because she lost the ability to swallow liquids, Chloe has been very sick.

Her parents agreed to the pediatrician's recommendation of inserting a feeding tube last week.

"It's something we did not want to see happen, but she's been very sick for the past seven months," Mrs. Key said. "She was aspirating all of her liquids."

Because the Keys have another daughter, Shelby, 13, who is unaffected by the disorder, they said it was "a big shock" to learn that Chloe had the genetic disease.

It is so rare, only one in 70,000 births is affected, according to the MPS Web site.

Most children do not survive past the late teen years with the disease.

"We can count so many blessings, because Chloe's love is so unconditional," Mrs. Key said. "If Chloe hasn't done anything else, she's drawn us closer to God."

Web posted on Thursday, April 22, 2010

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