Jamo Strong: A Home Run for Hope

Please see a note from Jamo's wonderful parents... First and foremost, we want to thank our family, friends, and community for supporting Jameson and his battle with this horrific illness. Prior to Jameson’s illness, he was completely healthy and happy. He was a very active boy who loved to swim, ride his bike, and spend every waking moment on a baseball field. In August of 2025, he became sick with a flu-like virus. It quickly resolved, but he appeared to have residual fatigue from the previous illness. On September 18th, we took him into the ER at CHOC for extreme fatigue and headaches; later that evening he was diagnosed with pneumonia, and we went home with antibiotics. September 19th, Jameson spent his day at home playing games, spending time with his siblings, and watching movies. Everything seemed completely normal. He told us he was tired, and he asked to go to bed early. In the middle of the night, our oldest son Aiden, woke me up because he said, “Jameson could not sleep.” I walked into the boys’ room and turned on the light to find Jameson seizing and drowning in vomit. Aiden saved his life. Because of Jameson’s instability, we were transferred to Corona Regional, and then to CHOC.

When we arrived at CHOC later that evening, Jameson appeared to be his normal self again. They were in the middle of running extra tests, when Jameson experienced his big seizure (lasting 9 minutes and 42 seconds). Once stabilized, he was transferred to CHOC’s Neuroscience Unit for a more specialized level of care. Initially, they told us to expect to stay through the weekend. The next day Jameson had his first lumbar puncture, a series of labs, and an MRI. All his labs came back completely clean, but his MRI showed significant swelling in his brain, specifically in his basal ganglia. Overnight, all of Jameson’s physical and verbal functions began to disappear. He went from being a perfectly healthy, athletic boy, to being completely devastated within 5 days of his seizure. The swelling would worsen over the next two months. Jameson’s team began to hunt for a diagnosis, but nothing could explain what was happening. Jameson started a series of steroids, IVIG, rituximab infusions, and multiple rounds of PLEX (plasmapheresis). We could not find a diagnosis.

At this point, Jameson’s team’s focused changed from finding a diagnosis to addressing the swelling. Our hope was that if the swelling would go down, we could potentially be left with less permanent damage. He began having monthly MRIs, and within a month, the swelling started showing minor improvement, but it was improvement, nonetheless. In October, Jameson began preparing going to rehab, but then we entered the darkest part of his hospitalization. He had developed dystonia. For over a month, Jameson lived in constant unrelenting pain with minimal relief. In late November, Jameson finally got some relief when his team decided to take an out of the box approach to addressing the dystonia. He slept through most of December; the Medic*tion regiment he was on was great for his dystonia but made him very tired.

The day after Christmas, our family received devastating news when Jameson’s MRI showed that his swelling had decreased, but he had sustained a very serious, rare brain injury. Jameson had developed bilateral striatal necrosis; a rare and devastating brain injury. We were shocked. We began to struggle with grieving our son (who he was before) and battling to do what we could to get him to rehab. Our family was broken.

In January and February, Jameson really started to improve. His improvement was slow; slower than anything we could describe, but his team started to become hopeful that he could go to rehab. After 6 months to the day at CHOC, spending 8 weeks in the PICU and the remaining time on the Neuroscience unit, Jameson was transferred to CHLA for intense inpatient rehab. For now, his diagnosis is: seronegative autoimmune encephalitis resulting in bilateral striatal necrosis. We are hoping to have a diagnosis in the future. Our family’s prayer is that Jameson’s illness will provide research that is used to help other kids in the future that may have this horrific illness.

Jameson has made massive strides during the past 10 weeks. He can now walk small distances with assistance, ride a tricycle, and use his hands to write and play games. He spoke for the first time 6 months after losing his speech initially, and every day he gets more of it back. He will be discharged from rehab on May 28th.

Dystonia continues to be a huge obstacle for Jameson, and he spends most of his day in extreme pain. Our family has decided to consent to DBS surgery in August. Our hope is that this three-part surgery will help Jameson’s brain re-wire around the pathways that are riddled with dystonia. Our prayer is that the neurosurgery minimizes Jameson’s dystonia and helps him to have a less painful, better quality of life. After surgery, our hope is that he comes back to rehab at CHLA. Jameson has been able to rehab so well despite his pain and dystonia, and we are hopeful and very excited to see what he will be able to do once the dystonia lessens. Our family’s goal is to be able to get Jameson the equipment and therapies he needs to hopefully be back on the baseball field someday soon.

Thank you for supporting our boy, and his journey.

-Manny and Caitlin Pulido

We hope this event is a time we can come together to celebrate Jamo's tenacity over the last year, encourage him to keep fighting and fundraise for his future!

If you cannot attend, but would like to donate, please see our GoFundMe page at https://gofund.me/9212acc82