Inspire Magazine Spring 2018 | Page 21

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 bleed- ing as well as spontaneous bleeding in joints and muscles. Kapono has devel- oped a factor VIII inhibitor—when the body's immune system targets the clotting agent, factor VIII, that medi- cation is trying to replace in the blood. “Children who have hemophilia, espe- cially severe forms like Kapono, have to replace this factor VIII every single day,” Dr. Desiree Medeiros said. 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 disor- der. “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.” Above: Part of the Ace Cares for Kids Program included a $10,000 donation from Duracell that was made to Kapi’olani Medical Center for Women & Children in honor of Kapono and Duke. The boys have been treated at Ace family across the state and the The Pavao family had to adjust to Kapi‘olani since they were babies at the nation. Kapono and Duke will also be Kapono’s medical condition, from the Hemophilia and Thrombosis Treatment the faces of the company’s fundraising chance for infections in a port in his Center of Hawai‘i. Their story resonated efforts for Children’s Miracle Network chest to keeping up with a fast-moving with the Ace Hardware Foundation, a Hospitals this year. Last year, Ace toddler who would end up black-and- dedicated supporter of the Children’s Hardware raised $11 million for CMN blue on his forehead, arms and legs. The Miracle Network Hospitals. In fact, they Hospitals in the United States including Kaua‘i couple started learning quickly made a special exception to name both Kapi‘olani. Kapono and Duke’s inspi- what was minor and what was severe. brothers the sixth annual National Ace rational story will be shared with store “The bruising depends on where it is Cares for Kids All-Stars. owners, staff members and customers at (and what it’s from)—taking a step, about 5,000 stores around the world. playing with toys— you get used to “Ace Hardware is really a family com- it and you’re keeping your eye out for pany,” Christine Doucet of the Ace “To see them grow up and become all- anything significant,” said Kaipo. Hardware Foundation said. “So when we stars, and to be great examples of what read Kapono’s story, one of the things your life should be like with a chronic Soon they had another baby boy, Keoni, that stood out was that he was very illness. It’s inspiring,” Dr. Medeiros said. who was born healthy. Their third son, brave and he taught his little brother Duke, would come a few years later to be brave. That story of family and It’s a sentiment shared by their parents. and would also test positive for severe brotherhood would really speak to the “You can be healthy and still be running hemophilia A. This time though, they people of our company.” around with things that don’t affect what felt prepared. “When we had Duke, we you do every day,” Sara said. “It’s good were able to do the same thing we did In January, the Ace Hardware Founda- for people to see that. Not everyone for Kapono,”Kaipo said. tion surprised the boys with their All-Star who goes to Kapi‘olani is sick. We announcement in front of classmates, definitely need their care, but they’re For the boys, treatment is a normal teachers, family and friends at Wilcox not just sick kids.” part of life. Duke has received factor Elementary. The first ever All-Star VIII infusions every morning through an brothers will now be introduced to the 21