Fall River warrior who had no chance at survival continues to defy the odds

FALL RIVER — Sabrina Paul’s two-year-old daughter, Kainoa, was born at just 9 inches long and 11 ounces. So small that doctors gave her almost no chance of survival. Against all odds, Kainoa is now two years old, but her journey has come at an enormous emotional and financial cost.

Kainoa has never been home. She has spent her entire life in hospitals, moving between four different facilities. She is currently in the Medical Intensive Care Unit at Boston Children’s Hospital, where she remains on a ventilator and faces a long list of complex medical challenges.

Kainoa was diagnosed with bronchopulmonary dysplasia, also known as baby lung disease, as well as bone disease of prematurity that has caused multiple fractures, including broken ribs, a broken femur, and spinal fractures. She also has white matter loss in her brain and periventricular leukomalacia, which often leads to a cerebral palsy diagnosis. Despite these obstacles, she has survived multiple episodes of cardiac arrest.

“She is a warrior,” Sabrina said. “Kainoa has had more surgeries and procedures than I can count. She has gone into cardiac arrest multiple times but always comes back to us.”

Sabrina, a single mother, also has an 11-year-old daughter. The constant travel between Fall River and Boston has taken a heavy toll on the family.

“I bounce back and forth multiple times a week from home to Boston,” Sabrina said. “It takes a huge toll on my heart. I have an 11-year-old girl, London, who is an amazing kid. It saddens me that I cannot always be with both girls. London has school and cannot stay in the hospital. When she visits Kainoa on the weekends, we have to stay in hotels, use Ubers, and eat. It’s a great expense.”

Sabrina has exhausted her Family and Medical Leave Act time and is currently unable to work so she can continue splitting her time between her two daughters.

Despite the many grim predictions, Kainoa continues to defy expectations. Once told she had only a 1% chance of having any meaningful life, she now smiles, laughs, and clearly feels love.

“Once we were told that she would be 99% an empty shell, and 1% would be to God,” Sabrina said. “God’s 1% is clearly a stronger force. She has made tremendous strides. She is a happy girl; she loves music, Disney, making friends, and affection. We have hope that Kainoa will be able to walk and talk. We were told she was probably going to be quadriplegic. We now know that she is vocal and all of her limbs work.”

Sabrina remains hopeful that with continued therapy and support, Kainoa will have the chance to live as normal a life as possible.

“She has fought so hard to be here,” Sabrina said. “We pray that she can overcome all the challenges ahead.”

The family is currently seeking support to help cover the ongoing medical and travel expenses while Kainoa remains at Boston Children’s Hospital. If you want to help or read more on Kainoa’s story, click here.