Emmett's Journey
Team Emmett
Team Emmett
Watch Emmett's Journey:
https://www.instagram.com/reel/DHcohszuBl3/?igsh=NTc4MTIwNjQ2YQ==
https://www.canva.com/design/DAGiH2J6LXw/DG_uB3kjIINOu204vQRqRg/watch?utm_content=DAGiH2J6LXw&utm_campaign=designshare&utm_medium=link2&utm_source=uniquelinks&utlId=h4361e67cb9
March 17th of 2024 was the start of Emmett’s journey. He was on the slide at a park and started to have twitching of the left side of his face and arm. We called 911 and when the EMTs asked us where we preferred to go, the answer was immediately Children’s Hospital of Orange County.
Up to that point, Emmett’s childhood had been very blessed. He was a thriving, happy child who loved to play with his friends at school and baby sister Emma at home. We never imagined that our 3-year-old could become severely sick. What followed in the next several months seemed even more unbelievable.
Emmett went from having one seizure, to having epilepsy, to ultimately being diagnosed with anti-NMDA-receptor encephalitis, a rare form of brain inflammation. He became psychotic and then catatonic in the span of 2 weeks. Emmett started multiple rounds of immunotherapy infusions, was on a revolving regimen of seizure and psychiatric medications, and had blood plasma exchange. The Neurology, Psychiatry, and Pediatrics teams at CHOC were crucial in developing his treatment plan. Throughout Emmett’s stay, Dr. Janetta Arellano, his primary neurologist, was constantly at bedside. Most children do very well if treated promptly and correctly, she told us, and would give us her amazing smile that would lift our spirits.
But Emmett didn’t seem to be getting much better. He continued to lay in his bed with a dull blank stare, looking but not seeing. He did not talk, did not comprehend, and the only sign that he was alive were his limb spasms that sometimes became so severe, we would have to pin him down. We quite quickly began to lose hope. Our confidence in Emmett, and in ourselves as parents, began to fade. We felt that somehow we had failed our son. Days without progress turned into weeks and then months at CHOC, and the pain seemed never-ending.
Eventually, Emmett gained the dubious distinction of being one of the longest-staying patients on the Neurology floor. In June, Emmett was deemed medically stable for discharge, and we were able to go home. As time went by without significant recovery, Dr. Arellano discussed several different options for further treatment. We ultimately decided to try a new infusion, one that she never before had given to any of her patients with this form of encephalitis. Emmett went regularly to the Outpatient Infusion Center to start this treatment and to continue the other infusions he had been receiving while admitted.
Throughout July and August, Emmett slowly began to give us some hope. He was able to sit unassisted and was then able to stand with assistance for several seconds. His involuntary movements decreased in severity and he finally became a candidate for rehabilitation. Emmett started physical, occupational, speech, and feeding therapy at CHOC Outpatient Rehab – on average he had 5-7 sessions weekly, sometimes twice in a day. In September, he started playing with his favorite car toys that he had ignored for so long. In October, Emmett was able to stand unassisted and then take several steps. By November, he was saying several words. And in December, Emmett was able to walk on his own, eat solid foods, speak bilingually, and able to enjoy Christmas with his baby sister and family, something we never would have dreamed possible.
It has been a full year since Emmett was first sick and his journey towards recovery continues to this day. He still has small deficits in his motor function and cognition but we pray that he will continue to progress. His infusions and therapy sessions continue but are needed less and less frequently. Thanks to the team of physicians, nurses, and therapists at CHOC, and especially to Dr. Arellano, there seems to be some light at the end of the tunnel. The staff at CHOC gave us hope for our son when we had nothing left to give ourselves. Without the support of all these incredibly talented health-care providers, Emmett undoubtedly would be lost to us. We are incredibly grateful to CHOC for giving our son another opportunity at life.
We're so excited to be participating in the 2025 CHOC Walk in the Park presented by Disneyland® Resort on Sunday, August 3, to raise funds for CHOC!
Every dollar raised from this magical event will support health care programs, education, and research at CHOC and CHOC at Mission Hospitals. More than two million children a year depend on CHOC. And our community's generosity is what provides access to the best possible care and services.
You can help us exceed our fundraising goal for the benefit of the children's health and well-being.
-Donate now by clicking the $ button next to the team member you'd like to donate to below or
-If you would like to WALK with us, Join Team Emmett at this year's event by clicking the "Join Our Team" button on the right
Many thanks in advance for helping us write a new future for so many children and their families.
With Gratitude,
Team Emmett
https://www.instagram.com/reel/DHcohszuBl3/?igsh=NTc4MTIwNjQ2YQ==
https://www.canva.com/design/DAGiH2J6LXw/DG_uB3kjIINOu204vQRqRg/watch?utm_content=DAGiH2J6LXw&utm_campaign=designshare&utm_medium=link2&utm_source=uniquelinks&utlId=h4361e67cb9
March 17th of 2024 was the start of Emmett’s journey. He was on the slide at a park and started to have twitching of the left side of his face and arm. We called 911 and when the EMTs asked us where we preferred to go, the answer was immediately Children’s Hospital of Orange County.
Up to that point, Emmett’s childhood had been very blessed. He was a thriving, happy child who loved to play with his friends at school and baby sister Emma at home. We never imagined that our 3-year-old could become severely sick. What followed in the next several months seemed even more unbelievable.
Emmett went from having one seizure, to having epilepsy, to ultimately being diagnosed with anti-NMDA-receptor encephalitis, a rare form of brain inflammation. He became psychotic and then catatonic in the span of 2 weeks. Emmett started multiple rounds of immunotherapy infusions, was on a revolving regimen of seizure and psychiatric medications, and had blood plasma exchange. The Neurology, Psychiatry, and Pediatrics teams at CHOC were crucial in developing his treatment plan. Throughout Emmett’s stay, Dr. Janetta Arellano, his primary neurologist, was constantly at bedside. Most children do very well if treated promptly and correctly, she told us, and would give us her amazing smile that would lift our spirits.
But Emmett didn’t seem to be getting much better. He continued to lay in his bed with a dull blank stare, looking but not seeing. He did not talk, did not comprehend, and the only sign that he was alive were his limb spasms that sometimes became so severe, we would have to pin him down. We quite quickly began to lose hope. Our confidence in Emmett, and in ourselves as parents, began to fade. We felt that somehow we had failed our son. Days without progress turned into weeks and then months at CHOC, and the pain seemed never-ending.
Eventually, Emmett gained the dubious distinction of being one of the longest-staying patients on the Neurology floor. In June, Emmett was deemed medically stable for discharge, and we were able to go home. As time went by without significant recovery, Dr. Arellano discussed several different options for further treatment. We ultimately decided to try a new infusion, one that she never before had given to any of her patients with this form of encephalitis. Emmett went regularly to the Outpatient Infusion Center to start this treatment and to continue the other infusions he had been receiving while admitted.
Throughout July and August, Emmett slowly began to give us some hope. He was able to sit unassisted and was then able to stand with assistance for several seconds. His involuntary movements decreased in severity and he finally became a candidate for rehabilitation. Emmett started physical, occupational, speech, and feeding therapy at CHOC Outpatient Rehab – on average he had 5-7 sessions weekly, sometimes twice in a day. In September, he started playing with his favorite car toys that he had ignored for so long. In October, Emmett was able to stand unassisted and then take several steps. By November, he was saying several words. And in December, Emmett was able to walk on his own, eat solid foods, speak bilingually, and able to enjoy Christmas with his baby sister and family, something we never would have dreamed possible.
It has been a full year since Emmett was first sick and his journey towards recovery continues to this day. He still has small deficits in his motor function and cognition but we pray that he will continue to progress. His infusions and therapy sessions continue but are needed less and less frequently. Thanks to the team of physicians, nurses, and therapists at CHOC, and especially to Dr. Arellano, there seems to be some light at the end of the tunnel. The staff at CHOC gave us hope for our son when we had nothing left to give ourselves. Without the support of all these incredibly talented health-care providers, Emmett undoubtedly would be lost to us. We are incredibly grateful to CHOC for giving our son another opportunity at life.
We're so excited to be participating in the 2025 CHOC Walk in the Park presented by Disneyland® Resort on Sunday, August 3, to raise funds for CHOC!
Every dollar raised from this magical event will support health care programs, education, and research at CHOC and CHOC at Mission Hospitals. More than two million children a year depend on CHOC. And our community's generosity is what provides access to the best possible care and services.
You can help us exceed our fundraising goal for the benefit of the children's health and well-being.
-Donate now by clicking the $ button next to the team member you'd like to donate to below or
-If you would like to WALK with us, Join Team Emmett at this year's event by clicking the "Join Our Team" button on the right
Many thanks in advance for helping us write a new future for so many children and their families.
With Gratitude,
Team Emmett
2.png){kind=logo}
Comments