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Friends plan benefit for family of boy with rare kidney disease

When Alex Griffin woke up one morning with swollen eyes, his mom suspected he had allergies.

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The Ridgeway community is coming together to sponsor a benefit dinner for young Alex Griffin, who is being treated for Nephrotic Syndrome, a rare kidney disease. A benefit spaghetti dinner is planned for 2 p.m. Sunday at the Mt. Victory Sportsman’s Club to help the family with expenses.

That was two years ago, said Heather Griffin, and what she took for an allergic reaction turned out to be much more.

At first, she said, doctors agreed with her assumption and treated her two-year-old son with medication to control the allergies. But Alex didn’t respond, so Heather took her son to another doctor, who ran tests and determined he suffered from a kidney disease.

It took additional testing to determine what disease was attacking his kidneys, said Heather, because his condition is very rarely diagnosed.

Alex suffers from Nephrotic Syndrome. Most cases are treatable, doctors told Heather, but Alex is an exception.

Only one in 20,000 is found to have Nephrotic Syndrome, said Heather, and it is even rarer for it to be untreatable.

“No one has ever heard of it,” she said of the disease.

While his twin brother plays and lives the life of a normal four-year-old, Alex has little energy. He takes a long list of medicines to control the symptoms from the syndrome.

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A benefit for Alex will begin at 2 p.m. Sunday at the Mt. Victory Sportsman’s Club. The event will feature a spaghetti dinner for a $7 donation. There will be cornhole tournaments and many items to raffle to raise funds to help the family with expenses.

For more information, call Brenda Ledley at (937) 363-2061 or (567) 674-5730.

 

For the complete story, visit www.kentontimes.com.  

 

 

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