A day with J.J.: Teen puts on a brave face while waiting for a t - FOX 8, WVUE, fox8live.com, weather, app, news, saints

A day with J.J.: Teen puts on a brave face while waiting for a transplant

J.J. (FOX 8 Photo) J.J. (FOX 8 Photo)
Source: Nancy Parker Source: Nancy Parker
NEW ORLEANS, LA (WVUE) -

The pint-sized Who Dat who kicked a dancing Panthers player out of the Saints end zone last fall turned 15 years old  in March. Since his trash talk went viral, Jarrius "J.J." Robertson has had more excitement than most people see in a lifetime. But behind the smile, he deals with a serious liver condition and desperately needs a transplant. 

"It's biliary atresia and it's a liver disease. The worst part is that I don't get to do sports like other kids do like football and other sports," J.J. said.

When Jarrius is out of the spotlight, he spends his days at Lutcher High School's Career and Technical Center. His classmates tower over him. Even though he's 15, he's only as tall as a 6 year old. It's a side effect of his condition that he's battled all his life. An independent study curriculum allows him to work from his computer anywhere. He can receive treatments at any time, and be ready if a liver transplant is imminent.

"He's very sick, and I must say he hides it. He don't show it because he has an image he has to become to fight. His fight is unbelievable," said Jordy Robertson, J.J.'s dad.

Ochsner gastroenterologist Dr. Maria Stella Serrano is his doctor.

"He has issues with bleeding episodes that he needs to be admitted to the hospital for. He has multiple problems that can only be treated in the hospital. Even though I see him in the public and trying to make the most out of his life, a lot of his time is spent here in the hospital with us," Serrano said.

Frequent doctor visits and weekly blood work are part of his life. Patricia Hoyal is his mother.

"It's ups and downs, but it's a blessing. You have to count your bad days with your good days," Hoyal said.

The uphill battle with Jarrius began after he was born. Hoyal was only 16. She and J.J.'s dad were teenage sweethearts at Lutcher High School when they had Jarrius in 2002. A couple of months later, they found out their baby was sick.
 
"Me and Jordy had went to the prom, the night before we went to prom, and that morning she's like, 'Y'all have to hurry and come home," Hoyal said. "'He has a fever, it's high! Call the ambulance! That's too  high!'"

Jarrius was born without the bile ducts that take toxins from the liver to the small intestine.

"So all the ducts and gall bladder that leads to the drainage of bile wasn't present when he was born. That is a fatal condition called biliary atretia. If the condition is not treated, a patient will die within a year," Serrano said.

The young parents had a difficult road ahead.

A liver transplant when Jarrius was 1 year old didn't work the way doctors had hoped. Jarrius went into a coma after complications. He stayed in a coma for a year.

"When the liver fails and you have issues with your kidneys, it affects hormones, growth and development. All of that happened in the earlier years of his life,"Serrano said.

Jordy Robertson said by the time his son reached 5 or 6 years old, he didn't grow anymore. He said they tried growth hormone shots and even nutrition to help him, but there was no change.

Jarrius endures abdominal pain, but he says fear is not an option.

"Don't think about what you're scared about," Jarrius said. "Just think about something that makes you happy."

Sometimes staying positive is hard. His father says Jarrius has sent him text messages saying he's ready to give up because of the pain.

That worries his mother.

"As a parent That's hard to listen to your child ready to give up. When you see him on TV it still can be a bad day, but you wouldn't know it," Hoyal said. "He's tough."

Jarrius pushes the boundaries and makes his own rules - from traveling with the Saints to signing a contract with the team based on his passion for defending their end zone. He spent part of his 15th birthday with Tom and Gayle Benson and received gifts like a 50-year anniversary signed Saints football. A Saints-themed golf cart satisfies the 15 year old's thrill on the road.

"I give him a chance to do things kids are doing these days. I don't want to hold him back from nothing. I want him to experience the normal life of a normal kid," his dad said.

They've made it their mission to spread the word about the importance of organ donation, and unfortunately, his survival depends on the gift of a liver from another child's tragedy.

Jarrius says it's tough but he has to wait for his time.

His mother puts it this way: "I don't want to be selfish and say I can't wait to get a transplant, but someone's child has to die for him to get a transplant. I have to humble myself and wait for a time. So when his time comes, it will come."

To support Jarrius, Ochsner has established a fund. Click here to learn more. To learn more about organ donation or to become an organ donor, click here.

Copyright 2017 WVUE. All rights reserved.

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