What if your earliest childhood memory was figuring out how to survive? It’s what two brothers with hemophilia B have been doing for more than half a century.
The courageous brothers, just four years apart in age, grew up in a small town in southern Kansas.
Raised primarily by their mother, they also had eight brothers and two sisters. The large, tight-knit family lived in a small two-bedroom house with no running water, electricity, or proper insulation. “We never knew anything different,” said Frank. “The boys slept with mom and dad in one room and our sisters took the other.” And as with most families living with this genetic disorder, there was family history—three of Frank and Carl’s brothers were also born with hemophilia.
The Not So Simple Life
Frank, Carl, and their siblings grew up doing everything they could for their family. Daily life included tending to several acres of farm land. They looked after one another and understood the value of teamwork. “That was our life,” explained Carl. “Everyone did their part.”
Their mother, Dora, was an asymptomatic carrier of hemophilia—in other words, she had the disease, but didn’t display symptoms. “It was no secret our family had the disorder, but there wasn’t much to know at the time,” explains younger brother Carl.
Tragedy struck the boys at an early age when their father passed away in 1951. This left their single mother to tend to 12 children, almost half of whom had a chronic disorder. This catastrophic event made everyone grow up even faster.
During the late 1950s and throughout the ‘60s, Frank and Carl’s childhood consisted of taking care of the homestead, going to school, and attending church. “My siblings and I would walk four miles to get to school and back,” said Frank. “Often times, we would encounter rain, snow, and dust storms. We would just link our arms and follow the fence line to find our way back.”
Tending to animals can be dangerous—especially for those with hemophilia. While tending to chores on the farm, all types of accidents occurred, causing long bleeds. Time after time, the brothers went on bed rest and waited for the bleed to stop. “We dealt with all sorts of different injuries,” said Carl. “Our duties on the farm were sometimes more dangerous than playing sports.”
During this time, the life expectancy of someone with severe hemophilia was just 20 years of age. Treatment options were still limited. “We had to choose how bad a bleed was,” explained Frank. “Is it worth traveling to the nearest hospital, hundreds of miles away?”
The family only had one car. A visit to the emergency room was an all-day event.
The 1970s and ‘80s presented new challenges. Several of Frank and Carl’s brothers passed away due to different disease states and poor health conditions. The blows kept coming, too—by the mid-1980s, it was confirmed that HIV/AIDS could be transmitted through the use of blood products, such as those used to treat hemophilia. “It was a scary time,” said Carl. “There was nothing we could do.”
Over time, the brothers began focusing on new endeavors. While Carl continued farming, Frank decided to open a welding shop. “We literally built the shop by hand. We stacked every brick to create a successful business,” said Frank.
ARJ Arrives Countryside
The fun-loving brothers needed more than just modern medicine. Kim Bushell, RN, an ARJ nurse supervisor, explains that when she met the brothers almost a decade ago, clinical work was required. “Not only did they need infusion care, they needed the emotional support of people who understood what they were going through. Frank and Carl both needed different types of attention.”
As with any ARJ patient, each brother came on service with a skilled care team to help manage their infusion and quality of life. “It’s not just the pharmacists and nurses who’ve helped us—our patient services rep, John, has been fantastic,” said Frank.
ARJ has been there for the brothers. “Everyone has been great,” added Carl.
Today, their ARJ patient services representative, John, has become a source of happiness. “He’s been a great friend to us,” said Carl. “He’s been by our side for years.”
Don’t Let This Define You
Today, Frank and Carl still have brothers and sisters nearby. And they still live in the town they’ve always called home.
Carl’s true passion is woodwork, and he demonstrates his commitment to loved ones by carving memorabilia wood chests for every member of the family. Frank built a successful auto repair business. Both brothers are involved in managing the family farm. Being lifetime residents of their hometown, they know just about everyone. They enjoy striking up conversations with locals and childhood friends.
As the brothers reflect on their lives, they think back fondly…