Our Story

Alohi – Hawaiian for Shining, Brilliant

Where to begin?  It’s difficult to summarize Alohi’s life and struggles.  Alohi has been our bright, little warrior from the beginning.  Born prematurely at only 27 weeks, she weighed a mere one pound and eight ounces.  She was so fragile; it was hard to believe she was alive!  Her battles to survive began immediately because she was born with a hole in her intestines and blood on her brain which ultimately left her with ongoing intestinal issues, Epilepsy and Cerebral Palsy.  Her stay in the NICU lasted for over seven months from March to the middle of October.  When finally released, she came home requiring oxygen and with ports in her abdomen for her food and medicine.  Many times, we thought we would lose our bright warrior, but she persisted and fought every step of the way.

She is now 6 years old and still dependent on her abdominal port for food and medication, but thankfully she is off oxygen and her seizures are currently under control.  Unfortunately, we recently found out both of her kidneys are in failure.  Again, she is in a battle for her life as she needs a kidney transplant.  

Most days you will find her listening to all types of music and watching shows filled with music.  She enjoys books as well and never hesitates to show you which ones are her favorite.  Alohi also enjoys going outside in her wheelchair when she’s feeling well enough to do so. 

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.