Traverse City Record-Eagle

May 23, 2013

Presidential Scholar has struggled with illness

BY ANNE STANTON astanton@record-eagle.com
Traverse City Record-Eagle

---- — 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.

But none of it ever held her back, Czarny said.

“If she's absent, she’ll email me, call me, where have we been and where are we going?” Czarny said. “She's absolutely relentless."

Niki said she considers herself "lucky" because she's learned how to stay caught up, no matter what happens.

Tubacki’s parents are as resilient as their daughter, Czarny said. For years, her dad has driven her to school from their Mancelona home, nestled on 20 wooded acres.

Sue said they enrolled Niki in the talented and gifted program at the Traverse City Area Public Schools at the suggestion of her Mancelona teacher. Niki was going through constant medical testing at Munson Medical Center in Traverse City anyway, and her dad's business is in town, so it made sense, Sue said.

Niki’s arthritis went into remission at age 7, but in fourth grade, health problems flared again. This time it was dermatomyositis, an inflammation of skin and muscle. She missed months of school and returned at year-end, puffy and heavier from steroids and unable to walk. She had to wear a hat indoors to protect her from the lights. She feared kids would make fun of her, but, instead, they enthusiastically pushed her wheelchair, and volunteered to stay inside with her at recess.

One girl made a card that said: “When life gives you lemons, make lemonade.”

For Niki, the "lemonade" has been her friends. When she’s at her sickest, she thinks of them and her family.

“That helps a lot,” she said.

She’s counting on new friends to help her through the rough times at the Massachusetts Institute of Technology, where she plans to study bio-medical engineering. She may specialize in tissue engineering, which could help others with her disease, she said.

Czarny said he's grateful she'll be close to the country's finest hospitals and specialists.

"That's the the best part of the calculus," he said.