A special bond between brothers

LIHUE — Kapono and Duke Pavao of Lihue held $10,000 in their hands Friday morning at a special assembly at Elsie Wilcox Elementary School.

Kapono, 9, a fourth-grade student, got help from his brother Duke, 5, a kindergartner, in endorsing the check from Duracell, an Ace Hardware partner vendor. The check was presented to the Kapiolani Medical Center for Women and Children following an announcement that named the brothers as Ace Cares for Kids All-Stars.

Kapono’s fourth-grade class, the school’s staff, Ace Hardware corporate representatives, and doctors and staff from the Kapiolani Medical Center, a Children’s Miracle Network hospital were all in the audience.

“This feels great,” Kapono said. “It is all so overwhelming.”

As part of Ace Hardware’s sixth annual Ace Cares for Kids All-Stars, Kapono and Duke’s family will join other All-Stars in more than 5,000 Ace Hardware stores across the country as ambassadors for the Ace Foundation, raising awareness for the work at local Children’s Miracle Network hospitals.

The $10,000 presented by Kapono and Duke to the Kapiolani Medical Center for Women and Children represent part of the national fundraising efforts by Ace Hardware and Duracell.

“We are excited to welcome brothers Kapono and Duke into the Ace All-Star family,” said Kane Calamari, president of the Ace Hardware Foundation. “Their story of brotherhood, strength, and living bravely through chronic illness inspires everyone they encounter, and makes them perfect choices for the 2018 All-Stars. Together, the Pavao family will use their story to raise awareness for Children’s Miracle Network hospitals and generate funding to ensure their important work can continue to help children like Kapono and Duke.”

The Pavao family also receives a trip to Walt Disney World in 2019 to attend the CMN conference.

“I’ve never been there,” said Keoni Pavao, Kapono and Duke’s brother. “I can’t wait.”

Sara Pavao, the children’s mother, said they visited Disney World when Keoni was a baby.

Kapono was diagnosed with Severe Hemophilia A, an incurable bleeding disorder that prevents blood from clotting properly, and poses a risk for spontaneous bleedling in joints and muscles. This diagnosis was a result of Kapono exhibiting signs of bruising and internal bleeding in his mouth at nine months old.

Five years later, Duke was born and also diagnosed with severe hemophilia A. Following their diagnoses, both boys have developed a Factor VIII Inhibitor — an antibody that renders the standard hemophilia treatment ineffective. Because of this inhibitor, both boys must mix and administer high dosages of Factor VIII infusions through an intravenous each morning.

“They had to go through an adjustment period,” Sara said. “It’s a relatively simple procedure that takes about five minutes, in and out. But they never fought or screamed. They just accept it as part of their daily life like brushing their teeth, or combing their hair.”

Dr. Desiree Medeiros of the Kapiolani Medical Center for Women and Children, said there are no limitations to the boys’ activities as long as they remain diligent in administering their daily IV and are aware of the warning signs.

“It’s beautiful because their parents haven’t let this affect the boys’ lives — they love to play baseball, surf, and ride dirt bikes,” Medeiros said. “The most wonderful thing is when Duke was diagnosed, Kapono developed into a role model for Duke who never went through the adjustment. We always get excited when we find out they’re coming over for a visit.”

Over the past 26 years, the Ace Foundation has raised more than $93 million for the Childen’s Miracle Network hospitals.