Local

Jacksonville community creates rally for 3-year-old's liver transplant

Right now, a 3-year-old boy in Jacksonville is waiting for a new liver.

Bentley Bullard’s family said he was diagnosed with a rare metabolic disorder called propionic acidemia affects his ability to process certain proteins and fats.

TRENDING: 

“It is around-the-clock care because they (Bentley’s parents) have to check a lot of things on him,” Bentley’s grandmother Susie Lawson said. “They have to make sure the G-tube is all clean, they have to make nutrition every day to make sure he’s getting it and if he doesn’t, then he’ll have adverse effects.”

Lawson said Bentley was diagnosed a few days after he was born at Wolfson Children’s Hospital.

Local physicians told his parents he is currently the only child diagnosed with this disorder in Jacksonville.

Lawson said Bentley currently uses a feeding tube and his learning development has been delayed.

According to the U.S. Library of Medicine, propionic acidemia affects one out of every 100,000 thousand people in the United States.

“Right now, propionic acidemia patients don’t live past 11 years old and he’s 3 1/2,” Lawson said. “So that’s very little time to have with him. So this liver transplant will help elongate his life.”
The Children’s Organ Transplant Association created a fundraiser to support Bentley’s entire family during his next surgery in Miami.

STAY UPDATED: Download the Action News Jax app for live updates on this breaking story

Download WJAX Apps
Lawson said the association's goal is to raise at least $42,000 while his family takes time off work to support Bentley.
“Everyone is working hard on their behalf to make sure this happens. So they don’t have to worry about financial issues when they are down in Miami trying to support and be with their child,” Lawson said.
The community has also created a food truck rally to raise funds for the campaign.
It will be from 4 p.m. to 8 p.m. Saturday, May 18, at 9600 San Jose Boulevard.