Some runners in the Bluegrass 10,000 on Wednesday will have extra incentive to cross the finish line: They'll be raising money for Kentucky children with juvenile rheumatoid arthritis, or JRA.
They hope to raise $30,000 to buy an ultrasound machine for Kentucky Children's Hospital. The hospital doesn't have a Point of Patient ultrasound machine, and without it, doctors are unable to quickly determine whether treatment is effective for JRA patients.
The fund-raising effort was started a little more than a month ago when Rob Perez's 12-year-old daughter, Samantha, was diagnosed with the disease, which causes joint pain and swelling, mostly in her fingers and toes. Perez has other fund-raising events planned, including a golf tournament in the fall.
Perez says Samantha experiences "trigger finger," a condition that locks her fingers when she tries to straighten them. She also has to give herself frequent, painful shots to reduce the symptoms. "It's pretty intense," he said.
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Perez, an owner of Saul Good Restaurant & Pub, was motivated not only by Samantha's recent diagnosis but also by the hurdles in treating it.
He was shocked that he would have to pay $2,000, with health insurance, for Samantha's first round of medications. And he was shocked again to learn the medicine wasn't guaranteed to work on Samantha's symptoms. She would have to have several MRIs before doctors knew for sure.
"If the medicine didn't work, we wouldn't know it for six months, and then she would have to switch over to another medicine," said Perez.
Because insurance wouldn't cover MRI scans, which cost $2,000 each and cause radiation exposure, Perez said, taking the initiative to get the ultrasound machine was a "no-brainer."
Perez said the machine will help Samantha and 150 other children at Kentucky Children's Hospital's rheumatology department to be treated more effectively and greatly reduce families' expenses. "It's a deal changer," Perez said.
When he told Samantha's doctors about his idea, they immediately got on board, he said.
Dr. Carmel Wallace, chairman of the department of pediatrics, said the ultrasound equipment could help ease anxiety about whether a treatment is working. And if it isn't, he said, results obtained from the ultrasound "may save several months of an unnecessary medicine."
Wallace said patients' families can make a big impact in the community when they champion improvements like this one.
Saul Good supports other causes in Lexington, but Perez said raising awareness for JRA is much different.
"When it's your child, it's so deep," Perez said. Sharing Samantha's story has been a rewarding experience, he said.
Samantha attends The Lexington School, and at least 50 of the school's employees have signed up to run in her honor. Amanda Hale, director of development at the school, and her husband created T-shirts for the group to wear. "We just want to let Sam know we support her and love her," Hale said.
Despite the challenges, Perez said, his daughter is handling the diagnosis with a smile. "Her attitude is incredible; she is just so positive," he said.