Beau Atkinson is a bit of a comedian – he loves telling jokes, making his friends and family laugh, and pulling pranks.
Hemophilia, though, is something he takes very seriously.
When Beau was just 6 months old, his parents, Kari and Craig, started noticing unusual bruising on Beau’s body, so they took him to their local pediatrician.
“He had a bruise under his arm that was two to three inches long and about an inch thick, and it was hard as a rock,” remembers Kari. “He had pea-sized bruises on the back of his head and what looked like fingerprints under his arms from people picking him up.”
The Atkinsons couldn’t recall Beau having any injuries, so the bruises were concerning. Their pediatrician suspected that Beau had hemophilia and referred them to University of Iowa Stead Family Children’s Hospital to consult with a pediatric hematologist.
Beau was diagnosed with hemophilia, a rare disorder in which the blood doesn’t clot normally because it’s lacking blood-clotting proteins. Rather than bleeding externally,
Beau would bleed internally, which led to bruising. To add to their concerns for their child, Craig and Kari learned Beau had the most severe hemophilia diagnosis.
“It absolutely rocked our world, because we went through every single stage of the grieving process,” Kari relates. “We feared for his future. What was it going to be like for him to crawl? What was it going to be like for him to walk? Was my child going to die? But we soon learned that we have what it takes to fix him.”
“When Beau was little and would have bleeds, we’d have to take him to the emergency room to have (clotting) medicine injected, because it has to be injected through one of his veins,” recalls Craig.
The older and more active Beau became, the more bleeds he would have. He got a bleed once playing baseball because he swung his bat too hard. He would get bleeds on his feet just by kicking his shoes off. But he also became more aware of what was happening, and how to treat it himself.
“One of the great things that the University of Iowa Stead Family Children’s Hospital offers is a summer camp for kids with hemophilia. During summer camp, Beau is with trained doctors and nurses, and they actually teach the kids to become independent and what we call self-infused,” Kari says. “Most people will cringe and will look away, even as adults, when somebody has to start an I.V. My son starts his own I.V. every single day, and he's been doing that since he was about 8 years old.”
He is also able to detect bleeds earlier, and knows he needs to treat them right away.
“With a regular bleed, you can feel the blood running down, but on the inside, you kind of feel the blood spreading over your muscles and tendons and then your arm gets really hot. And then sooner or later, when you touch it, it just hurts like heck,” Beau says. “It feels like you have barbed wire wrapped around it and it just keeps pulling tighter the more you touch it.”
Beau’s parents credit their son’s medical team with not only treating his hemophilia, but with educating them on how to care for Beau at home.
“The medical team is like an extension of our family,” Kari says. “This is a lifelong relationship. It is the only comprehensive hemophilia care clinic in the state of Iowa, so we do feel very fortunate that we live about 45 minutes away from this great hospital. When we need them, they are here for us.”
Today, 13-year-old Beau knows what activities to avoid and when he needs to be treated. His bleeds aren’t coming as often as when he was younger, and he knows what to do when they do occur. Beau loves World War II history and hopes to be a pilot someday.
Beau’s positive outlook in life even inspires his mom.
“Beau has taught me that we can’t control everything,” Kari says. “Sometimes we just have to be positive, think of the best, and understand that the sun is going to come up tomorrow. Tomorrow is a new day.”