Inspire 2018 SPRING

CMN: All-Star Brothers

Raising three active sons is a joy, and sometimes a scary challenge, for Kaipo and Sara Pavao.

“They are all quite different,” Kaipo said. “Kapono is strong-willed and rambunctious. The middle one, Keoni, he’s much more cautious and conservative.  As for Duke, he watches and he goes for it.”

They certainly are full of energy, especially when they start talking about their favorite things. “I dirt bike ride, I play baseball and I like to play outside on my bike with my friends,” Kapono said with a big smile. “And I like popping wheelies on my bike,” Duke added.   

Typical boys. But for Kapono and Duke, being typical is an achievement.

The boys were born with a rare blood disorder.

The first signs appeared when the Pavao's first child, Kapono, was circumcised. They noticed unusual bleeding. It stopped. But as he grew, there were more troubling signs.

“Kapono was about 9 months old, he was in his walker and got a small bruise on his rib cage. The next morning it was huge, all the way up his ribs,” Sara said. “Then a couple weeks later, he had a big swollen cheek and we took him to the doctor again. He had a bruise on the muscle inside his cheek.”

Before he turned 1, their son was diagnosed with severe hemophilia A. “I’ll never forget that phone call,” Sara recalled. “My knees got weak. You begin realizing how serious it is.”

Hemophilia prevents the blood from clotting properly. People with it are always at risk for life-threatening bleeding as well as spontaneous bleeding in joints and muscles. Kapono has developed a factor VIII inhibitor—when the body's immune system targets the clotting agent, factor VIII, that medication is trying to replace in the blood. “Children who have hemophilia, especially severe forms like Kapono, have to replace this factor VIII every single day,” Dr. Desiree Medeiros said.

The Pavao family had to adjust to Kapono’s medical condition, from the chance for infections in a port in his chest to keeping up with a fast-moving toddler who would end up black-and-blue on his forehead, arms and legs. The Kauai couple started learning quickly what was minor and what was severe. “The bruising depends on where it is (and what it’s from)—taking a step, playing with toys— you get used to it and you’re keeping your eye out for anything significant,” said Kaipo.

Soon they had another baby boy, Keoni, who was born healthy. Their third son, Duke, would come a few years later and would also test positive for severe hemophilia A. This time though, they felt prepared. “When we had Duke, we were able to do the same thing we did for Kapono,” Kaipo said.  

For the boys, treatment is a normal part of life. Duke has received factor VIII infusions every morning through an IV since he was a baby. “Actually, I don’t cry when I get it, only sometimes,” the 5-year-old said. For Kapono, 9, there have been more growing pains from living with the disorder. “It doesn’t worry me as long as I know I took my shot in the morning,” he said. “My doctor and my parents’ main worry is joint bleeds. Joint bleeds hurt, sometimes it like hurts a lot and you can barely move your arm because the blood just kind of stays there.”

The boys have been treated at Kapiolani since they were babies at the Hemophilia and Thrombosis Treatment Center of Hawaii. Their story resonated with the ACE Hardware Foundation, a dedicated supporter of the Children’s Miracle Network Hospitals. In fact, they made a special exception to name both brothers the sixth annual National Ace Cares for Kids All-Stars.

“Ace Hardware is really a family company,” Christine Doucet of the Ace Hardware Foundation said. “So when we read Kapono’s story, one of the things that stood out was that he was very brave and he taught his little brother to be brave. That story of family and brotherhood would really speak to the people of our company.”

In January, the Ace Hardware Foundation surprised the boys with their All-Star announcement in front of classmates, teachers, family and friends at Wilcox Elementary. The first ever All-Star brothers will now be introduced to the Ace family across the state and the nation. Kapono and Duke will also be the faces of the company’s fundraising efforts for Children’s Miracle Network Hospitals this year. Last year, Ace Hardware raised $11 million for CMN hospitals in the United States including Kapiolani. Kapono and Duke’s inspirational story will be shared with store owners, staff members and customers at about 5,000 stores around the world.  

“To see them grow up and become all-stars, and to be great examples of what your life should be like with a chronic illness. It’s inspiring,” Dr. Medeiros said.

It’s a sentiment shared by their parents. “You can be healthy and still be running around with things that don’t affect what you do every day,” Sara said. “It’s good for people to see that. Not everyone who goes to Kapiolani is sick. We definitely need their care, but they’re not just sick kids.