11/26/2007, 10:37 am
By Mary Baskerville
Thirteen-year old Balei Chinski faces pain each day, suffering from a rare immune-deficiency disease that leaves her unable to fight off infections.
In December, she will travel on an Angel Flight from the Greater Kankakee Airport to Duke University in North Carolina to meet with Dr. Rebecca Buckley, one of the leading specialists in the disease in the nation. Angel Flights are offered by a network of pilots providing free air transport to places offering specialized medical treatment.
She has juvenile rheumatoid arthritis and experiences difficulty with movement. The disease is similar to the one that caused the late David Vetter, the boy that became known worldwide as the “Boy in the Bubble,” to live in a germ-free isolator, said Balei’s mother, Cheryl Chinski.
Diagnosed with undefined severe combined immunodeficiency (SCID), her condition “is not like his. His was genetic and total,” Chinski said.
Balei’s immune system “comes on and off, like a faulty switch,” her mother said. Some days are fine, others are not, she said, adding that Buckley was one of the doctors to treat the “Boy in the Bubble.”
Balei faces her health problems with grace, Chinski said. Doctors call her daughter “a brave soul and a stoic soul,” she added.
A seventh grader at Bourbonnais Upper Grade School, Balei has only been able to attend classes for a week this year. She’s experienced strokes and has been hospitalized several times. She tires easily but tries to keep up with school work. A tutor is available for only five hours a week, Chinski said.
Her week also includes trips for physical, occupational and speech therapy. Health problems were first identified when Balei was just five months old.
Friends and family members are raising funds to help pay for Balei’s upcoming trip to Duke. Chinski will fly with her daughter and is grateful for the fundraising drive organized to help offset the costs.
Friend Michelle Beaupre said that while the doctor has agreed to see Balei because of the uniqueness of her disease, insurance will not pay for any of the tests or procedures done in North Carolina.
Both Chinski’s work and education have been shaped by her daughter’s disease. She is a full-time nursing student, expecting to graduate in July. She also works as a nurses’ aide at Provena St. Mary’s Hospital in Kankakee.
Working at the hospital has been wonderful because it gives her the security of being close when her daughter is a patient there. “When she’s ill, I can be there.”
Balei’s family includes her dad, Jeff Chinski, and sisters Micalyn, Kelsei and Madesen.
Friends are also planning a benefit from 1 to 11 p.m., at the Kankakee VFW, on March 1. The VFW has donated the hall rental.
Contributions to the “Balei Chinski Benefit Fund” may be sent to:
People’s Bank, 315 Main Street NW, Bourbonnais, IL 60914.