NEW ORLEANS -- By all accounts, Jarrius Robertson is living the dream.
He spent Super Bowl weekend in Houston, rubbing shoulders with stars such as Drew Brees and Deion Sanders, but the highlight of the weekend had to be Saturday night, before the big game.
Jarrius took the stage at the NFL Honors with Harry Connick, Jr. and Saints head cocah Sean Payton before a live, national audience.
"It felt great because everybody was going to be watching," he said.
The 14-year-old sauntered out on stage without a hint of stage fright. He strutted his stuff and showed off his big personality, while presenting the award for Comeback Player of the Year to Green Bay Packers wide receiver Jordy Nelson.
It has been a whirlwind few months since we met Jarrius on the football field at Lutcher High School in July. Back then, he was a Saints super fan and hype man for his high school team, but he caught the eye of the Saints.
The team signed him to an honorary contract and flew him to their game in Kansas City. He's been on the sidelines at LSU games and even made an appearance on Good Morning America.
When asked about it, he played it cool.
"I've been hanging with the Saints a lot, and the Pelicans," he said, like it's no big deal.
Jarrius may act humble, but he was impressed when he got to interview WWE stars when Smackdown came to New Orleans.
"That was cool because I had my own belt. I got a real WWE belt," he said. "And I got Triple Ace to sign it."
Jarrius's life isn't all glamorous events and high profile celebrities though. Three times a week for the last year, he and his family have been coming to Ochsner Hospital for Children. He's waiting for a liver transplant and his case is a complicated one.
"The hardest thing, because of Jarrius's size, it's hard to get a liver because you can't just take a piece. You need a whole liver and it's a pediatric liver," said Patricia Hoyal, Jarrius' mother.
Hoyal and Jarrius's father, Jordy Robertson, love to see their son in the spotlight.
"He was like, 'yeah, I'm going to the Super Bowl!' I'm like, boy, you're not going to the Super Bowl. He said, oh, just watch me!" she said with a big laugh.
For every Super Bowl, there are far more days spent in the doctor's office.
Jarrius has biliary atresia, is a chronic liver condition that's already required him to have one liver transplant. Now he needs another.
Dr. John Seal is Jarrius' pediatric liver transplant surgeon.
"Jarrius was born with a condition where his bile ducts don't form normally in the liver," Seal explained.
Considering the serious surgery he needs, Jarrius is in the right place. Ochsner has been named number one in the country for liver transplants five years in a row and is the only accredited pediatric liver transplant program in Louisiana.
In 2016, the Multi-Organ Transplant Institute at Ochsner has done more than 365 transplants, including heart, lung, liver and kidney transplants.
Jarrius has charmed the doctors and staff at the hospital.
"He's got this really radiant personality and that shines through in all of the camera time that he gets," Seal said. "But the reality is he's got some real serious symptoms from his liver disease."
When asked about it, Jarrius replied that he's always in pain, but he's dealing with the cards he's been dealt.
Jeanne Bergeron is a transplant specialists at Ochsner. She has watched Jarrius go through the pain and struggles.
"We know that his good days are great, but his bad days are also bad," she said. "So we are just waiting, patiently. Sometimes, not so patiently, but we have to wait."
No one knows how long that wait will last. He's already been on the list for a year. While he's waiting for a liver, Jarrius is using his new found fame for a good cause.
"It feels good because I know I'm making a difference in the world," he said.
It's become his mission to raise awareness about organ donation and to encourage people to sign up to be donors.
His motto is, "It takes lives to save lives."
It makes his dad, Jordy, proud.
"On the football field, off the football field, from the hospital bed, from home, even on social media, he's a great inspiration," Robertson said.
The family understands it can be a difficult topic to talk about.
"As a parent, you don't think about donating your kid's liver, or any part of their body once they're passed," Hoyal said. "So we're asking parents to take that time out and think about, well, my child just passed, but I can help someone else's child later."
And for now, Jarrius waits.
"When the time comes, it comes," he said with a wisdom beyond his 14 years.
With the support of the Saints and Ochsner, he and his family feel like they're in good hands.
"For us to have the backing of the NFL and the Saints and Ochsner Hospital, tag team behind us, I think we're a pretty strong team," Robertson said.
The Robertsons have set up the "Jarrius J.J. Robertson Fund" to help families dealing with the stress and financial burden of pediatric liver transplants. For more information, visit www.ochsner.org/jarrius. Click here for more information on how to become an organ donor.
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