By Janet Cremer
The very illness that requires 13-year-old Balei Chinski of Bourbonnais to get expert medical attention is also preventing her from getting the help she needs.
Complications from her rare immune deficiency disease have caused her family to postpone a trip scheduled next week to Duke University in Durham N.C., where she was to meet with medical experts.
The appointment will be rescheduled for mid-March.
“She’s still smiling and is cool about all this,” said Balei’s mom, Cheryl Chinski. “But she told the doctors she wants them to fix her. She wants to have a childhood and wants to spend time with her friends.”
Balei has been in the hospital every 10 to 14 days since November due to complications from her Undefined Severe Combine Immunodeficiency (SCID), which leaves her unable to fight infections. The rare illness affects about one in 500,000 people, according to Medicinenet.com. She also suffers strokes and has juvenile rheumatoid arthritis.
Just last week, Balei was a patient at University of Chicago Comer Children’s Hospital for five days, dealing with weakness, double vision and swollen joints. She was diagnosed with anemia and swelling of the blood vessels in her head, said Cheryl.
To complicate matters, when Balei gets sick, doctors often prescribe steroids, but she needs to be steroid-free for Duke experts to perform their tests, Cheryl said.
“We’re never able to wean her off,” she said.
The trip to Duke was to be the second in two months.
Her first appointment at Duke was in December, but was nearly missed when her Angel Flight was grounded due to weather. Angel Flight is a plane trip provided by a nonprofit network of pilots who fly for free those who need medical treatments. The trip was pulled off at the last minute when Kankakee resident Derek Denoyer donated his frequent flyer miles to the cause. Denoyer said he plans to do the same this time around.
A “Shop for Balei” is set for 10 a.m.-3 p.m. Saturday, Feb. 16 at the Bourbonnais Municipal Community Center. Eighteen vendors will be on hand including Lia Sophia jewelry, Tastefully Simple and Pampered Chef.
The Red Knights Motorcycle Club in Manteno will host a benefit for Balei beginning at 1 p.m. Saturday, March 1.
The event, at the Kankakee VFW Hall, 756 W. Jeffery St., features a DJ, food, raffles and door prizes from 1 to 4 p.m. Tickets are $10. Evening activities are 6-11 p.m. and include music, food, a cash bar, silent auction and raffles. Tickets are $15 each.
Tickets may be purchased at King Music in Bradley, Veronda’s Music Village in Kankakee and People’s Bank in Bourbonnais. To make a donation or for other information, call (815) 939-0825 or (815) 937-1745.