Marble Falls boy shares rare disease, strong will with Dallas Cowboy

Six-year-old Joel Thompson (center) of Marble Falls got to meet Dallas Cowboys defensive tackle Amobi Okoye (back row, left) on Nov. 15. The boy suffers from the same rare disease, anti-NMDA receptor antibody encephalitis, as the pro player. Also pictured are Okoye’s father, Augustine, (front row, left), Joel’s parents, Trenae and Dedrick Thompson, Okoye’s mother, Edna, and Joel’s uncle Keith Jerome (back row, right). Courtesy photo

JENNIFER FIERRO • PICAYUNE STAFF

MARBLE FALLS — Bobby Shirley, president of Burnet Bulldogs Tackle Football, wanted to do something to help the Thompson family.

Joel Thompson, 6, a Marble Falls Elementary School student, began playing for Shirley this season after battling anti-NMDA receptor antibody encephalitis two years ago.

So when Joel’s father, Dedrick, told him that Dallas Cowboys defensive tackle Amobi Okoye also suffered from the same illness, Shirley decided to unite the families, which happened Nov. 15.

“I think it’s more than just football,” Shirley said. “For this boy sees you can have a setback like this and still succeed in life.”

Okoye played for the Chicago Bears in 2012. He began having seizures in March 2013 that forced him to miss the entire following season. Doctors put him in a medically-induced coma and discovered he suffered from anti-NMDA receptor antibody encephalitis. He was later cleared by doctors to play again, and on May 16, he signed with the Cowboys. He is a member of Dallas’ practice squad.

The Thompsons said they enjoyed meeting Okoye but found talking to his parents to be incredibly helpful and encouraging.

They learned tips and hints on diet and activities to help Joel. The most important advice the Okoyes gave was letting time do its part. The Okoyes gave their phone numbers to the Thompsons, telling them to call anytime.

“Football was a small part of it,” Dedrick said. “The Okoye family is a great group of people.”

The Thompsons’ lives changed May 17, 2012, even though it started like so many other days.

Dedrick was working, and his wife, Trenae, was home with the children.

As the kids were about to take a nap, 4-year-old Joel’s left leg started shaking in an unusual way and then his arm. Just as he was telling his mother, he stopped talking.

Realizing he was having a seizure, Trenae went to the home of a neighbor who was a nurse and then called EMS.

Joel was transported to the Dell Children’s Medical Center of Central Texas. But after doctors could not find a cause for the seizure, they sent the Thompsons home.

Back at their house, he suffered another seizure.

“This time, it was his whole body (shaking),” Trenae said.

So the family went back to the children’s hospital, where Joel was given seizure medication. But that didn’t work, and worse, the medical staff still didn’t know what was ailing him. Even when he wasn’t seizing, Joel would stand and start to fall, so his parents made sure to stay nearby to catch him.

“Nothing in his brainwaves was irregular,” Dedrick said. “All the normal things that would show (to indicate what might be causing Joel’s condition) wasn’t happening.”

As the hours turned to days, Joel stopped talking and eating. By day 13, the boy stopped sleeping. The seizures, however, continued. So one parent slept in the bed with Joel, while the other was with the children at the Ronald McDonald House, which acts as a home away from home for families of seriously ill children being treated in hospitals.

“A lot of things you go through with your own body,” Trenae said. “Most of the time, you know what you’re working with. But none of the doctors, neurologists and specialists had an answer.”

Finally, the blood work revealed Joel’s immune system was overactive. Known as anti-NMDA receptor antibody encephalitis, antibodies fight off illnesses but also attack healthy parts of the body.

“They don’t know when to shut off,” Dedrick said.

According to the Thompsons, about 100 people worldwide are diagnosed with it.

Dedrick and Trenae met with Dell staff members each day to talk about treatment options. Doctors suggested a radical treatment: giving Joel purified blood to calm the immune system. But it required surgery with a peripherally inserted central catheter (PICC) line into Joel’s chest for treatments five days a week. To ensure the immune system would allow the blood to work, Joel was given steroids that often caused hallucinations and made him cry.    

“The worse part was he’d look in our eyes,” Trenae said, “and he didn’t know who we are. Prior to him getting sick, he would play the drums. He was a lively kid, full of energy.”

Even as they saw improvement, medical staff still needed to treat him using needles, and often times, they would apologize to Joel. But Joel told them not to worry about it.

The treatments occurred until the end of June, and Joel was moved to the Christus Santa Rose Hospital in San Antonio for more monitoring. Once they’re able, patients move on to physical therapy to relearn everyday tasks.

“That was the hardest part for Joel,” Trenae said.

On July 9, 2012, he was released to go home. His parents monitor him closely and still take him to Santa Rosa for checkups.

“Here was a child who never got sick,” Dedrick said. “He had speech, walking and motor skills.”

As time passed, Joel got stronger and grew. And when expressed a desire to play football last summer, his dad was all for it.

“He wanted him to get back to being a little boy,” Trenae said.

But before they signed off, Dedrick said he told his son that signing up meant committing to being at practices and games.

Through his work, Dedrick became friends with Shirley and coach Charles Frazier. Because Shirley kept up with Joel’s progress, the Thompsons felt confident coaches would do what was best for their son.

“We started slow, and he was making major improvements,” Dedrick said.

The sport became too much for him, so Joel sat for three weeks. He’s been back, saying to his family that it’s hard, but he’s not going to quit.

“He was a trooper about it,” his dad said. “He was a totally different person. He was a typical 6-year-old playing football.”

And equally important is that Joel’s personality is back, they said. Joel is known as the most honest of the Thompson children.

The Thompsons smiled when they were asked why they believe their family was chosen to go through this.

“We ask ourselves that every day,” Dedrick said. “So God can get His glory. He’s the God of every day, and He wants to be known.”

“We had to depend on God,” Trenae said. “God still works miracles. Our son is a living example of that.”

jfierro@thepicayune.com

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