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Start Here: River’s Story
New to River’s journey? Start here with River’s story, the heart behind Hearts With River, and the journey that continues every day.
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Music With River
Music is a big part of River’s world — songs, drums, piano moments, covers, and music time with River and our family.
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River’s Little Victories
Walking, movement, strength, new responses, and the little victories that mean so much in River’s journey.
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Questions About River
Answers to common questions about River — how he communicates, how he responds, how we care for him, and how he shows connection in his own way.
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Family Moments With River
Family moments with River — music, walks, outings, holidays, home life, and everyday love.
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Therapies With River
Therapy sessions, movement work, stretching, and the recovery moments of River’s journey — the daily dedication behind every little victory.
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Music Video
The Greatest Love
Music has always been part of River’s world, and he is the inspiration behind this song. When I wrote the song, I was sitting at the piano with River on my lap. When we recorded the song in the studio, River was present at every stage. When I was singing, River was right in front of me. And when we filmed this music video together, it became an experience I will never forget.
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59K followers
Friends, here is an important video. A lady named Trisha sent us a study which explains a lot about how aware brain injured kids can be despite how much they can express due to their injury. Thank you so much Trisha! Here is the message and more about the study:![]()
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Yes, brain injury survivors after drowning—particularly those with severe anoxic brain injury (ABI)—are frequently aware. Medical research indicates that many survivors who are unable to speak or move remain awake, alert, and fully aware of their surroundings, a condition commonly referred to as locked-in syndrome or Conrad Syndrome.” [source chip: UT Health Sa]![]()
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The research is led by Dr. Peter Fox, a neurology and radiology professor there, and the big study was published in the journal Pediatric Neurology in November 2023. His team used MRI, functional MRI, and PET scans to look at the brains of children who survived drowning — 154 of them in the larger study.![]()
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What they found. In about 60% of the children, the injury was focal — concentrated in the motor pathways (the wiring for movement and speech) — while the networks for vision, hearing, touch, cognition, and language were largely preserved. In plain words: the part of the brain that lets a child move and talk is damaged, but the part that lets them see, hear, understand, feel, and be aware is often still working. Dr. Fox's own words: "Even in the most severely affected of the children, we have evidence that at least the machinery for awareness of themselves and others remains functioning." And: "This is a new syndrome. It's not taught in medical school. This is all new neuroscience."![]()
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Why it's called "Conrad Syndrome." It's named after Conrad Tullis of San Antonio, the first child the institute imaged. He survived a drowning in 2004 and lived to age 20. His mother, Liz Tullis, pushed this research forward through a parent group and the Conrad Smiles foundation. Her line is the heart of the whole thing: "The fact that these children are 'in there' has never been communicated to the medical community." That phrase — "they're in there" — is the rallying cry of this research.![]()
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Sources: UT Health San Antonio — locked-in syndrome predominant outcome (2023 study) • UT Health San Antonio — "My kid is in there" MRI studies • Conrad Smiles — Pediatric Non-Fatal Drowning Research • MedicalXpress coverage of the study![]()
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#heartswithriver #riverthephoenix #anoxicbraininjury #lockedinsyndrome #conradsyndrome
I love to play ball with Daisy and River. Daisy gets so into it and goes get the ball and hands it back to River. She loves games and I love to see her have fun with her brother ❤️![]()
#heartswithriver #jamesmonroetv #riverthephoenix #daisyjune #playball
We got our blue check!!! Thr heartswithriver page is now verified on Facebook! Yay! 🌞![]()
#heartswithriver #thankyou #BrainInjuryAwareness
![Friends, here is an important video. A lady named Trisha sent us a study which explains a lot about how aware brain injured kids can be despite how much they can express due to their injury. Thank you so much Trisha! Here is the message and more about the study:
Yes, brain injury survivors after drowning—particularly those with severe anoxic brain injury (ABI)—are frequently aware. Medical research indicates that many survivors who are unable to speak or move remain awake, alert, and fully aware of their surroundings, a condition commonly referred to as locked-in syndrome or Conrad Syndrome.” [source chip: UT Health Sa]
The research is led by Dr. Peter Fox, a neurology and radiology professor there, and the big study was published in the journal Pediatric Neurology in November 2023. His team used MRI, functional MRI, and PET scans to look at the brains of children who survived drowning — 154 of them in the larger study.
What they found. In about 60% of the children, the injury was focal — concentrated in the motor pathways (the wiring for movement and speech) — while the networks for vision, hearing, touch, cognition, and language were largely preserved. In plain words: the part of the brain that lets a child move and talk is damaged, but the part that lets them see, hear, understand, feel, and be aware is often still working. Dr. Fox's own words: "Even in the most severely affected of the children, we have evidence that at least the machinery for awareness of themselves and others remains functioning." And: "This is a new syndrome. It's not taught in medical school. This is all new neuroscience."
Why it's called "Conrad Syndrome." It's named after Conrad Tullis of San Antonio, the first child the institute imaged. He survived a drowning in 2004 and lived to age 20. His mother, Liz Tullis, pushed this research forward through a parent group and the Conrad Smiles foundation. Her line is the heart of the whole thing: "The fact that these children are 'in there' has never been communicated to the medical community." That phrase — "they're in there" — is the rallying cry of this research.
Sources: UT Health San Anto](https://www.heartswithriver.com/wp-content/plugins/instagram-feed/img/placeholder.png)
More Music From the Journey
Tout est possible
Tout est possible was the first song I released for River.
It is a half English, half French song where I talk to River about an adventure. I was raised in both languages, and I love speaking French to River. With French, we can express love and emotion in a completely different way.
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