Ocean’s Hosts Benefit For Sick Baby

By Madeline Ziecker

Ioane Lepisi Jr. Courtesy photo.

A benefit concert, “And The Beat Goes On,”  will be held for Ioane Lepisi Jr., a seven-month-old Maui baby who was diagnosed with Hypoplastic Right Heart Syndrome in April of 2011. The concert will begin at 7 p.m. at Ocean’s Bar & Grill on Friday, November 11.

Hypoplastic Right Heart Syndrome (HRHS) is a rare heart condition which refers to the underdevelopment of the right side structures of the heart. The chambers, valves and related blood vessels on the right side of the heart are malformed.  This can cause several complications, especially in infants like Ioane Lepisi Jr.

Ioane has already had two open-heart operations in his young life, and the benefit is being held by his family to help finance his third surgery this year. The surgeries are being performed using the Norwood Procedure, a complex open heart surgery method which involves creating systematic and pulmonary circulation.

Ioane’s mother Atarah says that there aren’t any options for the healthcare that her son needs on Maui where they reside. She has sought treatment for Ioane at Rady Children’s Hospital in San Diego and at Kapiolani Medical Center in Honolulu and is very happy with the results thus far which afford her son more of a chance at getting well.

Atarah observed that a large number of the children admitted at Rady Children’s Hospital in San Diego for HRHS were from Hawaii, even though there are only two babies that she knows of with this type of condition on Maui: her son and a boy with Hypoplastic Left Heart Syndrome, which is more common.

Since Ioane was diagnosed in April, Atarah and the rest of Ioane’s family have held events and silent auctions to try and lift at least some of the financial burdens of having a baby with a heart problem. Along the way, Atara says she discovered an opportunity to serve a greater cause than affording treatment for her son’s individual condition. She began involving other organizations in her projects so as to help raise awareness about HRHS.

“My ultimate goal is  to raise awareness about this heart disease and to let others know that there are services out there who can help while also providing for my family. If I keep this up I hope to build a foundation specifically for cases of HRHS.”

Organizations who are participating in Friday’s benefit are Hui No Ke Ola Pono, My Family Planning, American Heart Association, Legacy of Life Hawaii, Dept. of Veterans Affairs Maui Community and Base Outpatient Clinic.

Ioane’s family organized a special lineup for the benefit including popular island bands Fayah, Titilua, Josh Tatofi, Alliez, Mele Pono, Malino, Nuff Sed, Kapena’s Tivaini, and Off Tomorrow’s.

Ioane Lepisi Jr. has been discharged this week and will be present with his family at his benefit. Ione’s family would like to thank friends, community, the Kahului Union Church, participating organizations and venues, Dr. Frank Balm, and Dr. Lamberti for their support.

Tickets will be available for $15 pre-show and for $20 at the door. Call Atarah Vaaimamao for additional questions or details at 254-2613.