DENVER (KDVR) — November is National Epilepsy Awareness Month and a Children’s Hospital Colorado patient shared his story of courage to push through a rare diagnosis with FOX31 and Channel 2.
“We just had no idea what was going on with him,” Courtney Bernal, the mother of 15-year-old Andy Bernal said.
Andy’s mom said back in 2018 when Andy was 11, he was diagnosed with Febrile Infection-Related Epileptic Syndrome, a very rare, life-threatening condition that results in developmental disabilities and epilepsy.
“He was significantly getting worse and we are going to put him in the ICU. Upon arrival in the ICU he had a seizure and he’s never had a seizure before,” Bernal said.
He had to be placed in a medically induced coma for six weeks at Children’s Hospital Colorado to save his life after he suddenly began to experience uncontrollable seizures. He then learned he had FIRES. Bernal said originally Andy was having symptoms of intense headaches and vomiting.
“I have been there off and on, the first time it was around three months,” Andy said.
During his time in the hospital, Andy stayed positive not only for himself but for others going through a major health crisis. During his stay for his epilepsy monitoring, he hosted his own TV show at the hospital. He would conduct interviews with other kids and staff and loved the role of being a talk show host.
“I love talking to people and I thought interviewing people would be fun too,” Andy said.
The show was hosted via the Seacrest Studios through Children’s Hospital Colorado. Even on the tough days and when Andy was bound to his hospital room, the show went on.
“He was in the epilepsy monitoring unit so they brought an iPad up to the room so he could facilitate it all from his room,” Bernal said.
She said the TV show brought Andy joy.
“His whole life has changed since this illness appeared,” Bernal said.
Andy is still facing challenges with his health but he said he feels good.
“This past May I had a stroke and then I had brain surgery before that and it was hard for me cause I was nervous for all of it,” Andy said.
Andy’s last surgery was on May 5. It was to remove a portion of his brain to help control the seizures. Currently, Andy spends his time building Legos, drawing, reading and walking the neighborhood dogs. He loves dinosaurs and all things related to Jurassic World movies.
“It was a tough journey,” Andy said.