Update: Five-year-old diagnosed with one-in-a-million condition shows improvement

BATON ROUGE — In a heartwarming turn of events, Kaiden, the brave five-year-old diagnosed with a one-in-a-million medical condition, is making remarkable progress in his recovery journey. It has been almost two weeks since his last seizure, and his medical team is optimistic about his prospects.

On July 10, Kaiden Bryce Simeon woke up feeling sick with a fever. He ran high fevers for two more days before his family took him to the hospital.

“He was at my house and told me he didn’t feel good and had a headache. I started immediately giving him Tylenol and Motrin, which didn’t help,” said Simeon’s grandmother, Lori Payne. “The next day, they took him to the walk-in clinic. They tested him, and they said he tested positive for strep. They gave him some antibiotics, doubled up on Motrin and Tylenol, and sent him home. Well, two days later, he didn’t seem like he was getting better, and his fever had spiked to like 106.”

Payne said July 13 is when life changed forever.

Payne said Simeon’s mother took him to Our Lady of the Lake Children’s Hospital, but by the time they arrived, the young boy’s fever had subsided and he was discharged.

“His mom took him to children’s in Baton Rouge,” Payne recalled. “They said the same thing and discharged him. When she got to the parking lot with him, he got in the car, and all of a sudden, he fell out into a seizure. It lasted maybe 20 minutes. When we got in the ER, they had to bag him and put him on the ventilator. He has 50-100 seizures a day. He stayed in Baton Rouge, and then they transferred him to Texas Children’s Hospital.”

The following two weeks were filled with tests while Simeon continued to have seizures.

Doctors diagnosed him with Febrile Infection-related Epilepsy Syndrome (FIRES). FIRES is a rare, sudden-onset chronic epilepsy syndrome. The seizures and irreversible neurological damage develop between 24 hours to two weeks after an acute febrile infection like an upper respiratory illness or a stomach bug.

According to the Epilepsy Foundation, FIRES is found in one in a million children.

Doctors placed Simeon in a medically induced coma because of the frequent seizures.

On Aug. 12, Simeon was taken off the medicine that caused the coma. His grandmother said the seizures didn’t stop.

“Some days he has none (seizures) but some days he has had up to 50-100 seizures,” Payne stated. “The family will fight for the little boy who loves life and loves Jesus. We ask the world to pray for Kaiden and we appreciate everyone.”

His mom recently updated Facebook, sharing some significant developments. Kaiden has been gradually waking up and showing signs of increased alertness in response to decreased sedation. Moreover, there is now a possibility that Kaiden may be able to come off the ventilator soon. This would be a monumental step towards his recovery, bringing joy and relief to everyone who has been closely following his story.

The outpouring of support from the community has been overwhelming, and Kaiden’s story has touched the hearts of many. His family is immensely grateful for the love and encouragement they have received during this challenging time.

The road ahead may still hold challenges, but Kaiden’s determination and the incredible support system around him serve as a beacon of hope for anyone facing adversity. We will continue to monitor his progress and share updates on his journey.

You can help the family with any donations to their GoFundMe page, or you can Venmo directly to his mother @Joshau-Daigrepont. All proceeds collected go directly to the family’s travel, lodgings, and expenses. The family is trying to keep bills paid in two places here and in Texas, and they say that alone is extremely hard.

“We want to bring recognition to this FIRES Syndrome,” Payne said. “It’s one in a million. We happen to be one of those million. If your child says they have a headache or fever, you get up and take them to a hospital. Don’t wait around, and make sure you pay attention.”

Download the Unfiltered with Kiran app from the Apple App Store and Google Play to stay updated on any new developments.

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