Meet Adrienne ? a nearly two-year-old little girl who lights up every room she enters. She?s a bubbly social butterfly with a love for music, dance parties, bubbles, and lights. She?ll stop everything for a K-pop Demon Hunters song or Mamma Mia, and she has a special place in her heart for animals. She is pure joy, and she is fighting for her life.

Adrienne?s Story

Adrienne was born with polyvalvular disease ? severe pulmonary valve complex stenosis, moderate aortic valve stenosis, and moderate insufficiency ? as well as biventricular hypertrophy. Her heart conditions were discovered at birth and have progressively worsened over her short life.

Her very first days were spent in the NICU, where she stayed for three months. It was there that she was also diagnosed with Noonan Syndrome, a rare genetic condition. During that time, Adrienne struggled with feeding difficulties that led to a food aversion, and she eventually required a gastric tube so that she could receive all of her nutrition safely.

A heart catheter procedure a few months later led to aspiration pneumonia ? she had to be life-flighted back to the hospital, where she spent another two months recovering. After a precious few months at home, Adrienne returned to the hospital for a month-long trial of an experimental medication aimed at reversing the thickening of her heart. It didn?t work.

Today, Adrienne?s heart has worsened significantly. She is now living full-time at UF Health Shands in Gainesville ? two and a half hours from home ? waiting for a heart transplant. Her condition is serious enough that leaving to wait at home is no longer a safe option. She needs a new heart, and she needs one soon.

Our Family

Adrienne?s world is her mom, Rei, and her dad, Andrew ? and two dogs named Daisy and Yogi who are waiting faithfully at home for their girl to come back.

When Adrienne was admitted for this extended stay, Rei had to leave her jobs to be by Adrienne?s side around the clock in the hospital. Andrew is now carrying the full financial weight of the family ? paying all of their bills back home while also covering the cost of rental cars and rides to make the two-and-a-half-hour trip to visit his daughter and his partner. They rarely get real time together, because when Andrew visits, Rei takes the chance to rest and breathe ? something she can?t do while she is Adrienne?s sole caregiver every other hour of every day.

This family is doing everything right. They are showing up completely for their daughter. And the financial and emotional toll of doing so is immense.