A story about “locked-in syndrome” and research being done at UT Health San Antonio is attracting national attention. It’s also pulling at the heartstrings of the journalists reporting it.
The story, originally written by Will Sansom, executive director of media communications at UT Health San Antonio, described locked-in syndrome as occurring in children as a result of drowning.
“Some children narrowly escape the horrors of drowning only to face a different kind of suffering: trapped inside their own bodies, awake but paralyzed, communicating by eye movements and sounds, unable to walk, speak or eat,” Sansom wrote.
The research being conducted in the lab of Peter Fox, M.D., director of the Research Imaging Institute and professor in the Joe R. & Teresa Lozano Long School of Medicine, shows that cognitive and sensory networks are preserved in the brains of these children. The injury does not, as formerly believed, impact the entire brain, but is confined to a small area. The findings support parents’ conviction that their locked-in children are experiencing emotions, learning new ideas and developing personalities.
Sansom used stories of real children with locked-in syndrome and their families to illustrate the condition, including that of Conrad Tullis, and his mom, Liz Tullis. Out of her experiences with Conrad and a desire to help other families, Liz Tullis established the Conrad Smiles Fund. The name comes from the fact that she was told Conrad would never smile again, but he does.
Sansom’s story was picked up and recrafted into both a written report and a video featuring Dr. Fox by Ivanhoe Broadcast News, the country’s largest news-gathering organization covering medical breakthroughs, family health and issues important to women. The story earned a People Power Award for 2017 from Ivanhoe.
And the touching story of how research can offer hope in what is by all appearances a hopeless situation moved the news organization itself. Ivanhoe awarded its charity gift fund of $600 to the Conrad Smiles Fund.
In a letter to Tullis, Ivanhoe CEO Marjorie Bakaert Tomas wrote, “By sharing your story, we hope more families facing a devastating diagnosis of brain damage in their child never have to hear the words ‘withdraw care’ from their neurologist.”