TRAVERSE CITY – Nicole “Niki” Tubacki doesn't remember much about her early childhood except for swinging outside in the sun.
“I used to love to swing because I couldn’t run,” she said.
At age 3, Tubacki was diagnosed with juvenile rheumatoid arthritis, which explained the pain in her joints. As years ticked by, her symptoms piled up and led to a diagnosis of mixed connective tissue disease, the umbrella name for several diseases that attack muscles, skin and organs.
Tubacki also was gifted with exceptional intelligence. This week she was awarded top honors at Traverse City Central High School's convocation. She also was named a U.S. Presidential Scholar, placing her in an elite group of about 140 students from around the country. In mid-June, she'll fly to Washington, D.C. to receive a Presidential Medallion and possibly meet President Obama.
Her mom Sue will go along, while her dad plans to stay behind to run his security equipment business. Niki selected Tom Czarny, her advanced placemenet biology teacher, to attend the medallion ceremony.
Czarny praised Niki as an “extraordinary human being” who has never let disease define her. She packs tremendous resilience into her 90-pound body, he said.
“She’s absolutely tiny, like a spring warbler,” Czarny said. “But she has a skeleton of re-bar. She has an extraordinary capability of withstanding hardships.”
Niki has spent long periods in a wheelchair or homebound. She's endured chronic pain, chemotherapy and blood transfusions. Her skin is pale from a lifetime of avoiding the sun, which triggers flare-ups. She takes nearly a dozen drugs, some that depress her immune system. She must be hyper-alert to infections; a fever above 100.5 requires a trip to the emergency room. Her eroding jawbone makes it painful to eat and will mean a future surgery.