Family supports Kid Captain along road to recovery

When Kid Captain Enzo Thongsoum was first admitted to the hospital as a toddler, doctors couldn’t identify the cause of his seizures. Upon arrival at the University of Iowa Stead Family Children’s Hospital, doctors quickly discovered that his brain was under attack by his own immune system.

Ryan Adams

Kid Captain Enzo Thongsoum poses for the camera in the Hawkeye football locker room at Kids Day at Kinnick on Saturday, August 10, 2019. Kids Day at Kinnick is an annual event for families to experience Iowa’s football stadium, while watching preseason practice and honoring this year’s Kid Captains.

Kelsey Harrell, News Reporter
September 26, 2019

Enzo Thongsoum passed every test he needed to as a 21-month-old with flying colors — until he began having unexplained seizures.

His family took him to the hospital in their hometown of Des Moines, but a lack of a diagnosis and improvement from treatment led to his transfer to the University of Iowa Stead Family Children’s Hospital.

Then a toddler, Enzo was diagnosed with anti-NMDA receptor encephalitis, a condition where the immune system attacks the brain and causes seizures and abnormal facial movements.

Now nine years old, Enzo will represent the Hawkeyes as Kid Captain at Saturday’s football game against Middle Tennessee State.

“I’m really excited to see his reaction,” Enzo’s mom Phanna Kem said. “We just don’t know what Enzo we’re going to get, but I just hope he’s going to enjoy all that cheering for him.”

Since he began his time in the hospital, Kem said, Enzo has played with toys and enjoys watching movies. One of his favorite things to watch is Sesame Street because of all the music, she added.

Enzo also loves the outdoors, walks with his family, playing with his little brothers, and just overall being around others, Kem said.

His cousins and brothers made the recovery process easier on him, Kem emphasized. Enzo is a lot happier when they are all around him.

“I remember when Enzo was really sick, and the only thing that made him happy was having my crazy kids around,” Bopha Mom-Baccam, Enzo’s great aunt said.

With the help of his family and medication, Enzo’s condition has continued to improve.

“Once we left the hospital, he started making more improvements,” Kem said. “You know he’s been able to eat on his own again, he’s been able to walk on his own. He’s still nonverbal, but I think he understands a lot of what we’re saying — he just can’t communicate back to us.”

When Enzo was first admitted to the hospital, anti-NMDA receptor encephalitis was a newer illness that doctors now look for when someone has a small change in neurological function they cannot explain, Enzo’s doctor Katherine Mathews said.

Before getting the test results back determining if he had the condition, Mathews said she decided to treat him as if he were diagnosed with it already.

He was treated with immunoglobulin therapy, which is commonly used to treat antibody deficiencies, and steroids to moderate his immune system, Mathews said. Complications from the condition, such as seizures and sleep issues, received treatment as well.

Matthews said that Enzo practices physical, occupational, and speech therapy to improve his condition since his release from the hospital.

“He has made steady improvements with the help of a lot of therapy in addition to the medicines that we’ve been giving,” Mathews said.

To help with his recovery, Enzo’s family came together to help take care of him, Mom-Baccam, said. When Enzo gets done with school, he usually goes to Mom-Baccam’s house to give his parents a break.

“We just want him to be happy, you know,” Mom-Baccam said. “Being happy is just being surrounded by people who care about him, whether it’s family, his teachers, [or] his friends.”