Sara and Kaipo know all too well the amazing, lifelong care delivered by CMN Hospitals through the treatment provided to two of their sons battling chronic illness.
At nine months old, Kapono exhibited signs of severe bruising on his back and internal bleeding in his mouth. Fearing for their child’s safety, Sara and Kaipo traveled from their home on the Hawaiian island Kauai to neighboring Oahu to meet with doctors at Kapi’olani Medical Center for Women & Children. Through examination and tests, Kapono was diagnosed with Severe Hemophilia A, an incurable, genetic bleeding disorder that prevents the blood from clotting properly and poses a risk for spontaneous bleeds in the joints and muscles. They were devastated by their son’s diagnosis, but they vowed that they would do everything in their power to ensure that Kapono’s condition did not prevent him from leading a full life.
Five years later, Duke was born and was also diagnosed with Severe Hemophilia A. Dr. Desiree Medeiros, Medical Director of the Hemophilia and Thrombosis Treatment Center of Hawai’i located at Kapi’olani and the boys’ doctor, has said that “Because Duke has such a brave and well-adjusted older brother, hemophilia was never an issue for him and he is proud to be just like Kapono.” Dr. Medeiros believes the boys have a particularly full life compared to other children living with hemophilia due to the diligence and encouragement of Sara and Kaipo. “The parents advocate for their boys, but neither parent allows the hemophilia to define their sons or their family.”
Since their diagnoses, both Kapono and Duke have developed a Factor VIII Inhibitor – an antibody that renders the standard hemophilia treatment ineffective. The brothers each underwent surgery to insert a port that would allow easy access for medication, but unfortunately, they experienced complications and had to have their ports removed. Due to their inhibitor and inability to accept medication via port, the boys must receive a high dose of Factor VIII through an IV each day. A nurse by profession, Sara is responsible for giving her sons their IVs each morning, which stabilize their blood clotting protein levels for the majority of the day. It is her hope that soon her sons will know how to mix and administer their medication so that they can be independent in dealing with their condition.
Thanks to the education and preventative treatment provided by Kapi’olani Medical Center for Women & Children, there are no limitations to the brothers’ activities so long as they remain diligent in administering their daily injections and are aware of warning signs. Today, Kapono and Duke are energetic little boys who love to play baseball, surf and ride dirt bikes with their middle brother, Keoni. Doctors hope that if the brothers continue to take preventative measures and lead healthy lives, they will avoid the internal bleeding, chronic joint disease and infections that threaten hemophiliacs.
Kapono and Duke’s story of family and living courageously with an incurable illness inspires everyone they encounter. Their exuberance for life is contagious and inspires other children battling diseases to be brave and have hope. It is with deep empathy for children who are also receiving care in CMN Hospitals that drives Kapono and Duke to want to make a difference. The family is extremely excited to give back through partnering with Ace and is grateful for the opportunity to positively impact the lives of children and patient families just like theirs.
The Ace Foundation, through the generosity of Duracell, made a $10,000 donation to Kapi’olani Medical Center for Women & Children in Kapono and Duke’s names when they were crowned the 2018 Ace All-Stars on January 26, 2018.
Meet Our All-Stars
UPMC Children’s Hospital of Pittsburgh
Kapi’olani Medical Center for Women & Children
St. Louis Children’s Hospital
Rady Children’s Hospital
Children’s Healthcare of Atlanta
Phoenix Children’s Hospital
Ann & Robert H. Lurie Children’s Hospital of Chicago