INDIANAPOLIS— One Indianapolis family is packing their bags for an important trip to Washington, D.C. but they aren’t going for sightseeing.
The Flora family and many others are headed to Capitol Hill to advocate for better healthcare policies for those with bleeding disorders.
As part of the National Bleeding Disorders Foundation’s annual Washington Days, they’ll meet with lawmakers to push for critical funding, insurance protections and access to life-saving treatments.
For the Flora family, hemophilia is more than just a diagnosis, it’s a reality that spans generations.
"My brother was diagnosed first and then I was diagnosed with a milder form," said Vanessa Flora. "When I had children, we knew there was a 50/50 chance of passing it on."
Her two sons Elias and Emmett have severe hemophilia while their daughter is a carrier with mild symptoms.
"It impacts every part of our lives," says Elias, a high school athlete. "We have to take special medications just to clot properly and without them even a minor injury could lead to permanent damage."
The Flora family says their medical costs totaled around a million dollars in 2024.
Bleeding disorders affect around 70,000 people in Indiana, ranging from mild to severe cases.
Dr. David Hendrick, a hematologist in Indiana says about one in 8,000 children are born with hemophilia, and about one in 1,000 have a milder form.
"While advancements in treatment have drastically improved outcomes, early diagnosis remains critical," said Dr. Hendrick. "Family history plays a big role and if you have a relative with unexplained bleeding issues, talk to your doctor."
He says bruising or bleeding that doesn’t make sense should be evaluated.
The Flora family is determined to protect access to specialized treatment centers, blood safety measures and medication oversight.
"We can’t go back to the days when people contracted HIV from unsafe treatments, like Ryan White did here in Indiana," said Flora.
Despite the challenges, the family remains strong.
"We’ve had to be a tight-knit unit and advocate for ourselves," she says. "The boys support each other through chronic pain and injuries, and our daughter may have her own challenges in the future but we’re fortunate to have some of the best doctors."
"We just want to live normal lives," said Elias. "We didn’t choose this condition, but we can choose to fight for better care and policies that protect families like ours."
