Axyl’s Story: Defying the Odds Against Encephalitis

On May 28th, 2021, our lives changed forever. My son Axyl, just three years old at the time, came down with a fever and sore throat. Initially, we thought it was a typical childhood illness. He wasn’t eating, wasn’t himself, and as parents, our concern quickly grew. After 24 hours, we took him to his pediatrician, who diagnosed him with strep throat and prescribed antibiotics. We hoped to see improvement, but instead, Axyl’s condition only worsened.

After another 24 hours with no signs of progress and his fever climbing beyond what ibuprofen and Tylenol could manage, we rushed him to the emergency room. There, he was diagnosed with rhinovirus and sent home with instructions to let the virus run its course. We were told that fevers could last up to 10 days, but deep down, something felt terribly wrong. As the days passed, Axyl lost nearly 10 pounds in just 12 days, and his condition grew increasingly alarming. He refused to eat, became extremely malnourished, and started hallucinating. My once energetic boy was now having staring spells, violent outbursts, and calling his brother “Mom.” His behavior was completely out of character.

When we brought him back to the emergency room, they were ready to discharge him again. But I refused to leave without answers. I knew something was majorly wrong and demanded further testing. Finally, a CT scan of his brain was performed, and what followed is a moment I will never forget. A team of infectious disease specialists rushed into the room, telling me that Axyl’s brain was bleeding and an immediate spinal tap was necessary. Axyl was sedated, and within moments, he was admitted to the ICU. The next 72 hours were critical.

Axyl was diagnosed with Herpes Simplex Virus (HSV) encephalitis, a rare but life-threatening inflammation of the brain caused by the herpes simplex virus. He was placed on a PICC line and treated with a series of antivirals while we anxiously awaited the results of his spinal tap culture. His brain activity was “abnormal,” and he was hooked up to machines monitoring every aspect of his fragile condition. The bleed was located in his right temporal lobe, impacting his memory, cognition, and emotional regulation. He also experienced paralysis on his left side. We were told to prepare for the worst.

Despite these terrifying setbacks, Axyl’s resilience shone through. While the road ahead was uncertain, he began to defy every expectation. With intensive care, anti-seizure medications, and around-the-clock monitoring, Axyl fought back. By day 10 in the hospital, he was laughing, jumping, and playing with toys. Neurologists were stunned. Based on his MRI results, they said Axyl should have been in a vegetative state. But my little miracle defied the odds, again and again.

Axyl’s recovery was nothing short of remarkable, but it wasn’t without its challenges. He had to relearn how to walk, talk, and eat. His memory was so impacted that he didn’t recognize familiar foods and even tried to eat crayons when handed to him. But his brain—beautiful and resilient—rerouted itself faster than anyone could have imagined. With love, patience, and therapy, Axyl regained many of the skills he had lost.

Fast forward to today, Axyl is now seven years old. We cherish every single day with him, knowing how close we came to losing him. While he has made incredible progress, the long-term effects of encephalitis remain. He struggles with cognitive and motor challenges, his right side is weak, and his short-term memory makes school a daily hurdle. Emotional outbursts are part of our new reality, but we’ve embraced the “new Axyl” with open hearts.

Some people pity his story, but we hold our heads high. Axyl’s journey is one of resilience, courage, and the power of love and advocacy. We’ve chosen to focus on the positives because negativity only breeds more negativity. Every day, we remind Axyl that he is here for a purpose—a purpose that will one day change the world.

One of the greatest lessons I’ve learned from this experience is the importance of advocating for your child. Mothers, fathers, caregivers—trust your instincts. You know your child better than anyone else. When Axyl’s symptoms were dismissed, I refused to back down. I pushed for tests that ultimately saved his life. Doctors are human and, despite their degrees, don’t always get it right. Be your child’s voice and fight for answers when something feels wrong.

Axyl’s story is one of hope and perseverance. While encephalitis has left its mark, it has also highlighted the strength of the human spirit—especially in a child who continues to defy all odds. Our miracle boy reminds us every day to never give up, no matter how dark things may seem. His journey is proof that miracles do happen.

If you would like to speak to someone about encephalitis, please contact our helpline.

Story published November 2025