Most days when 10-year-old Coty Allen wakes up, he feels sick.
Coty Allen, 10, holds his brother Cooper, 3, at their home in Martinez. There will be a fundraiser for Coty, who suffers from a genetic kidney disease called Dent's, at the Columbia County Fairgrounds on July 9. Cooper is beginning to show symptoms that he might have inherited the disease also.
Photo by Jim Blaylock
His mom, Kari Allen, says it's a side effect of medicine he takes at night for a rare kidney disorder called Dent's disease - a condition she says only Coty is reported to have in the United States.
Besides the sickness in the morning and not being able to play outside in hot weather, Coty right now doesn't feel any other effects of the disease.
"I've been spending time with friends, spending the night at their house, staying up late, playing video games,'' said Coty, an Evans resident whose health has been stabilized lately with the help of medicine. "It's been real fun.''
Coty's parents know their son's disease could become fatal by the time he becomes a teenager, and they say they are in a race against time to get him treatment at the Mayo Clinic in Minnesota, which has done extensive research on Dent's disease.
Just to be seen at such a clinic can cost $3,000. To help the Allens with such an expense, their community has already held fundraisers. And now, that effort continues.
A benefit concert for Coty, a fourth-grader at Bel Air Elementary School, will be held from 2 to 10 p.m. Saturday at the Columbia County Fairgrounds. Admission costs $10 per person, and children 12 and younger will be admitted free with a paying adult.
"If I didn't have the help from my friends, family and the community, (my wife and I) don't know what we would do," Brent Allen, Coty's father, said, adding that proceeds from the country music concert will help with the cost of Coty's medical expenses.
The Allens say Coty is only one of six children in North America and the only one in the United States afflicted with the genetic kidney disorder, which has no cure. Coty's father and mother say they're doing everything in their power to get their son the best medical treatment.
Any day now, Coty's parents say, they're waiting to hear that Coty and his 3-year-old brother Cooper, who is already beginning to show signs of Dent's disease, can go to the Mayo Clinic to be evaluated for the disease.
"That's the ultimate goal, because once they're there, they will be able to do some research and hopefully find a cure," Mrs. Allen said.
Coty's parents say doctors predict that he will need a kidney transplant by the time he is a teenager.
Although Coty has already lost 30 percent of the usage of his kidneys, his parents say his health has been stabilized.
Coty said he just wishes his health problems would go away.
"I wish I could get a kidney transplant, and so all of this would be done," he said. "I just want to be normal."
IF YOU GO:
WHAT: Concert For Coty Country Music Benefit
WHEN: 2-10 p.m. Saturday
WHERE: Columbia County Fairgrounds on Columbia Road. Organizers ask that patrons not bring coolers.
COST: $10 per person, cash only. Children 12 and younger get in free with a paying adult.
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