The Paradysz Family

“When something in life happens, the only choice is to stand up and do,” says Angela (Angie) Paradysz. “And that is what Chris and I did the day in January 2002 when we learned that our 11- year-old, Allie, had lupus—we chose to learn more about it and to help find a cure.”

From initial feelings of “helplessness,” says Chris, to the vision of a cure in under a decade, the Paradysz family has taken bold steps to change the outlook for their spirited daughter. “Our actions are purely selfish: to help our child get well,” they say. “And we know what will lead us there: research, research, research!”

A Very, Very Sick Child

In early 2002, the unknowns for the Paradysz family were great and the fear immense. The 7th grader was at home in Mill Neck, NY with her parents and younger sister, Dani and brother Nico, when she first got sick.

It was Christmas break and school was out. Allie seemed to have some sort of viral infection, perhaps the flu. She was listless and had a fever. Her glands were swollen. The pediatrician tested for strep throat, mono, and other illnesses.

North Shore’s Schneider’s Children’s Hospital admitted her for closer observation—and she ended up staying for two months. “No one knew what was wrong,” Angie recounts. “Every department saw her. There were questions, lots of tests. They did heart scans. Blood transfusions. Her fever was so high—104°—that she was put in ice beds. But the treatments didn’t change anything.”

When they moved Allie to the ICU, pediatric rheumatologist Dr. Norman T. Ilowite, diagnosed and started treatment for lupus. Within 24 hours, the fever that had lasted 28 days was gone.

Hunting for Answers, Finding the Foundation

“As I sat in the hospital room caring for Allie,” Angie recounts, “Chris was on the phone outside finding out as much as he could about lupus.” He was so very hungry for information, recalls Foundation founder Susan Golick. “He’d call me in the morning and on his train ride home.”

“We found Susan and the Foundation at one of our most desperate moments in life—a sick child,” Angie says. “They educated and guided us to the right specialists and the best care.” Allie was additionally diagnosed with thyroid disease and juvenile diabetes.

The Only Choice: To Stand Up and Do

That difficult spring for the Paradysz family, the Foundation was organizing a “Jazz Night” fundraiser. Chris, a jazz enthusiast and guitarist, jumped at the chance to help, saying “This is my thing!”

The dedication of Paradysz talent, funds, and energy to the lupus cause had only just begun. Chris applied the inquisitiveness and determination that spelled such success for him in co-founding ParadyszMatera, a marketing service organization specializing in customer acquisition, to finding solutions to lupus.

In 2003, he joined the Foundation board. And in 2006, the family hatched a plan with fellow board member Teri Wood to leverage contacts in the Palm Beach equestrian world with the creation of a “Shady Ladies®” fundraiser. The annual luncheon auction of celebrity sunglasses, together with contributions and the kids’ collection of prize money from junior riders, has raised over $235,000.

This November, on the night of the Gala, Chris plans to push off on his bicycle Ride to a LifeWithoutLupus.org, a venture kickstarted in August when NASCAR driver Brad Coleman sported a “Life Without Lupus” panel on his racecar. “I have to do something,” Chris says. “That’s why I’m going to ride my bike and rabble-rouse my way through the back roads of the eastern United States to the home of the Daytona 500—to raise money and make some noise for lupus.”

A Family Living On

Today, lupus primarily affects Allie, a Drew University sophomore, with flares signaled by sore muscles, weakness, and fatigue. But for the most part, her lupus is quiet. She’s home on weekends to ride horses and be with the lively Nico and her ‘best friend,’ Dani.

“Following every board meeting, I get a call from my daughter to ask how it went,” says Chris. “And for the first time since she developed lupus, I am able to tell her that there is progress. Real progress. The fact that new drugs finally are being trialed is a huge breakthrough. But we also have a distance to go.”