BDFF Spotlight: Nicki Salopek and Carter Fahrubel
Nicki Salopek and Carter
Hometown: Lakeland, Florida
Involvement with BDFF: 3-plus years
Nicki Salopek and her husband Bart Fahrubel were a bit surprised by the diagnosis of their son, four-year-old Carter Fahrubel. There is no record or evidence that hemophilia has ever been a part of their family. But when Carter was four months old, doctors told the Lakeland parents that he indeed had hemophilia B, also called Christmas disease, in which one-third of all cases are caused by spontaneous mutation. Carter has severe hemophilia B, which represents about 60 percent of all cases.
One day the couple was busy raising a baby boy and the next, they were part of the bleeding disorders community, a world they knew nothing about, but a world they would soon get to know first-hand.
“I started meeting people in online communities and then our HTC (Hemophilia Treatment Center) told us about the Bleeding Disorders Foundation of Florida,” says Nicki.
Eight months later, Nicki and her family, including her daughter Kyndra Salopek, 11, were participating in the Tampa walk. Fast forward to her family’s third year in the event, and Nicki is the walk chair.
“This is my first year volunteering and advocating,” says Nicki. “I am committed to put my time and energy toward getting the word out about hemophilia.”
Knowing that she is helping people understand the disease takes some of the frustration away when she encounters those unfamiliar with hemophilia.
“They will say, ‘I’ve heard of it before,’ and then I explain what Carter has to go through. Then they nod and say, ‘well, he will grow out of it right?’”
Nicki particularly appreciates that the money raised in the walks and other events goes back to the bleeding disorders community because the people involved and the BDFF have been such a blessing to her family.
“They have done so much for me,” she says.
Nicki is also thankful for the help, support and advice from other moms she has met through Foundation events.
“It is nice to talk with people who understand what we go through on a daily basis.” she says. “It is a lot more relaxed. I know that it’s not just me going through this.”
Beyond a successful year as walk chair and her fundraising team of Clotting for Carter in the Tampa Superhero Fun Walk this month, Carter and another young man in the community, Hunter, were featured as a superhero dynamic duo on the t-shirt presented to individuals who raised over $25 in Tampa.
“It was perfect for Carter,” Nicki says. “He loves Batman and Superman.”