Positively Jax Day: Nassau teen lived with Positively Jax spirit

FERNANDINA BEACH, Fla. – Joshua Barber had many talents.

Whether it was singing, writing his own music, playing instruments in the Fernandina Beach High School band or learning to fly airplanes, the 16-year-old accomplished a lot for someone his age.

But his most impressive talent might have only been felt by those who knew him.

Barber was born with Loeys-Dietz syndrome. The rare connective tissue disorder disfigured his hands, feet and head.

His crippling condition did not affect his spirit.

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“Josh has been a surprise. A gift from God,” Barber’s mother, Josie, said. “At the time, I was 42 years old, so, I really wasn’t planning on having another child. But you know what? The Lord always has a plan.”

Josie and Mark Barber, Joshua’s father, said it was hard to understand at first.

In 16 years, Joshua had 26 major surgeries. One procedure partially fixed a severe cleft palate at 6 months old. He also had his aorta, the largest, most vital artery in the body, repaired.

“As a mother, it’s very scary because you don’t’ know if he’s going to be alive the next 10 minutes, the next 10 hours, the next 10 days,” Josie Barber said.

Of the three Barber sons, Josh was a challenge to care for, often spending summer vacations in the hospital.

“We were talking about doing a travel log: Florida’s best hospitals for kids because that’s how we spent our summers. Repairing things, so he could get back in school,” Mark Barber said.

Besides the surgeries, there were so many nose bleeds, broken bones and countless trips to the emergency room. During the toughest of times, Josie often recalled what her own mother told her right after Josh was born.

“‘If God wants to take your child, Josh, God would have taken him way too soon. You would have had a miscarriage or stillbirth. You better stop crying and do the best you can. Josh has a purpose,’” Barber recalled.

Mark Barber said LDS ravaged his son’s body, giving Josh one of the worst cases known to doctors.

“With the exception of -- thank you, Lord -- he had a brilliant brain. Some of the LDS kids, because of the shape of the head, run into brain problems. He didn’t have any brain problems, which was a miracle,” he said.

The disease caused Josh’s hands to turn precariously. His fingers seemed to float. That did not stop Josh from learning to play the drums.

After watching his two older brothers play fighter aircraft video games, Josh not only figured those out, but he also eventually learned to fly an actual plane.

Music was among Josh’s life loves, writing and singing his own songs.

“I know we always talked about music, we talked about drumming, but that’s not his only talents, one of the talents he had was he could talk with anybody,” Mark Barber said.

It was that gift that won Josh friends, everywhere he went -- including in all the hospitals.

Hospitals were part of Josh’s norm, which is why what happened in November of 2020 caught everyone off-guard. Josh collapsed in the family’s kitchen and was rushed to the hospital where doctors discovered his enlarged aorta.

“They did meds for three weeks and said, ‘What we’d like to do is send you home, keep him on the meds. We want to get this part here to coagulate and then we’ll operate on the top about six weeks from now.’ So, we literally thought we were going home,” Josh’s father said.

Sadly, Josh never made it home.

But it was at his funeral that Josh’s parents found renewed hope, amid their heartache, learning from so many different people just how deeply their son had touched anyone he met.

Classmates, music teachers and other adults spoke of how Josh’s ever-positive spirit always inspired them.

“He’d go off to have a surgery done or something and I’d talk to them (Josh’s parents) and, ‘Yeah, Josh is still coming for his lesson.’ Day after he’s back from surgery, he’d show up with his crutches. We’d figure it out. I’d say, ‘Let’s do this.’ He’d say, ‘Okay, let’s do this’” Josh’s drumming instructor said.

“I absolutely loved Josh. He was one of my best friends and I wouldn’t trade any moment with him for the world,” said a neighbor who knew Josh for years.

“Josh had so many accomplishments. He just really did a fantastic job. He didn’t just do the things he did but he did a wonderful job doing them. I know I’ve been inspired by him. My brother’s been inspired by him. I’m going to miss him a lot but he’s always going to inspire me and everyone he’s been around,” said a fellow bandmember at Fernandina Beach High School.

Josh’s love of flying has led his parents to establish the Joshua Barber Memorial Scholarship, which will award a $1,000 scholarship to selected seniors enrolled in the Fernandina Beach High School Aviation Technology Program.

For more information on the scholarship program contact Friends of Fernandina Aviation Vice President, Mark Avakian, at mavakian@comcast.net or FoFA President, Roger Ridings, rogerrid@bellsouth.net 678-234-9082.