It’s the time of year when planet Earth orbits toward its darkest days, the season when we search for hints of light and hope amid the shadow and gloom.
There’s no more fitting metaphor for the life of Conrad Tullis, a little boy who endured a terrible tragedy but went on to bring miracles and healing to those around him, not just family and friends but the broader San Antonio community and innumerable souls beyond.
I introduced readers to Conrad’s story in 2006. When he was 17 months old, Conrad was at his paternal grandparent’s home in Temple, where he was staying while his mother and father, Liz and Matt Tullis, enjoyed a trip to Costa Rica.
Conrad and his grandfather were in the backyard, playing. The grandfather went inside to get a drink of water, pausing to load a few dishes in the dishwasher. When he looked out the window, he saw what he thought was a bundle of clothes floating in the swimming pool. It was Conrad.
Under water for unknown minutes, the toddler suffered major brain damage.
You would think such a nightmarish calamity, a disaster born of a moment’s unwitting inattention, would have ripped apart Conrad’s extended family permanently, with no healing available. But that’s not what happened.
The family instead closed ranks around the child, putting all their focus on helping Conrad overcome his injury to the fullest extent possible.
I wrote in my story that Liz’s ability to forgive sprang “from certain givens. For one, any energy she expends in anger means energy taken away from Conrad. For another, what her father-in-law did was simply negligent. And who can cast the first stone in that regard? Who hasn’t run a red light or talked on a cell phone in the car?”
But the larger story about what happened to Conrad involves all that came after. Some doctors told the Tullises to institutionalize their son — that he was beyond having any sort of meaningful life.
They didn’t do that. Instead, Liz launched into a whole range of therapies, often without the benefit of insurance coverage, to make life better for their son. Physical therapy. Hyperbaric treatments. Acupuncture. Water therapy. Aromatherapy. Light therapy lamps.
All of that helped Conrad escape the painful contractures that can twist and torment a brain-injured person’s body.
But Liz wanted more for her son. Really, the story of Conrad Tullis is about a mother who took an unqualified cataclysm, something that would have cut down most parents, and spun it into a mission to help brain-injured children who’d also survived near-fatal drownings.
Through a nonprofit entity she founded, Conrad Smiles, Liz has partnered with scientists, researchers and others to improve the understanding and treatment of Anoxic Brain Injury (ABI), which denotes damage done to a brain when it’s deprived of oxygen.
In 2010, she partnered with Dr. Peter T. Fox, director of the Research Imaging Institute at UT Health San Antonio, who at the time was conducting brain-scanning research on children with autism.
With Liz’s help, Fox began scanning the brains of children with oxygen-deprived injuries while they were asleep, including Conrad. The result was groundbreaking research, published in a noted medical journal, that found such children are “in there.”
Fox discovered these children seem to experience something called “locked-in syndrome,” in which they’re conscious of their environment but unable to interact with it because of their inability to speak or move.
The findings stand to potentially revolutionize thinking about such injuries in children, raising hopes that possible new treatments might be found.
Liz, a longtime corporate executive, then joined forces with other scientists to research and create a safe and painless stimulation therapy called Transcranial Direct Current Stimulation, or tDCS, which targets the area of the brain damaged in children who survive a near-drowning accident.
The non-invasive treatment, which uses direct electrical currents to stimulate specific parts of the brain, has been shown to help patients suffering from traumatic brain injury, stroke, Alzheimer and Parkinson’s, as well as other conditions such as language and movement disorders, impaired cognition and chronic pain.
The research, which is ongoing, focuses on whether tDCS can help bring about consciousness recovery for children affected by ABI.
Liz’s advocacy for her son and other children extends beyond science and into the realm of politics and laws regarding access to life-affirming medications.
For more than six years, she and others lobbied the Texas Legislature to extend the use of anti-seizure medications that include cannabidiol (or CBD) for patients like Conrad, whose diagnosis and type of seizures didn’t meet the initial prescribing criteria.
They won — something of a minor miracle in Texas, where politicians tend to avoid issues like medical marijuana (even though the medication Liz and others were fighting for doesn’t contain the ingredient in weed that creates the high.)
Starting when he was 16, Conrad was able to receive Epidiolex, which greatly reduced his debilitating seizures and enhanced his ability to communicate with others — a full repertoire of responses that included coos, laughter and smiles.
Now I tell the final chapter of Conrad’s life on Earth.
His smile — so inspiring and touching to so many — finally came to rest last month.
On Nov 26 at 6:50 a.m., Conrad, 20, died in his mother’s arms. A week earlier he’d been admitted to the hospital for a respiratory infection.
“It happened quickly and he was at peace,” Liz said.
It wasn’t RSV, the respiratory infection that has been making the rounds among children, nor was it COVID-19, said Liz. She thinks it was something that blew in with a recent cold front, some bug that his body was just too fragile to withstand.
When Conrad was admitted to the hospital, the staff at first didn’t know which unit to place him in — in terms of chronological age he clearly was an adult, but in terms of his physiology, he was still in some ways a pediatric patient. Confusion ensued until the teams from the two different divisions began working in unison.
Conrad bringing folks together once again, Liz said with a soft smile.
In many ways, that’s the larger message of her son’s life, she said. More than all the research, all the scientific and policy breakthroughs, Conrad brought out the best in people – their humanity.
Liz (she and Matt eventually divorced) made a habit of taking Conrad out into the world. There would be no sequestering, no hiding her special son away. From kindergarten through high school, he was mainstreamed into classes in the Alamo Heights School District, in addition to receiving special education.
Along the way he made tons of friends, children and teens who embraced Conrad as one of their own, inviting him to birthday parties, squiring him around in his wheelchair at football games, hanging out with him during school and after.
When Garrett Tullis, 17, pushed his older brother Conrad in his wheelchair across the stage during Alamo Heights High School’s 2020 graduation, the student body went absolutely wild with cheers and applause.
Liz so trusted Conrad’s friends, many of whom he’d known since kindergarten, that she allowed them to drive her wheelchair-accessible van in order to take him on social outings.
“Because what 20-year-old wants to always be with his mother?” she asks.
It’s impossible to know the impact Conrad’s presence had on his young, “neurotypical” friends, what lessons in love and compassion he taught them.
Garrett and some of Conrad’s pals now plan to disassemble his old wheelchair, to make art objects and rings out of its constituent metal parts, to give to those who cared about him.
Liz thinks her son was just tired and ready to go, now that all his friends were away at college. Garrett says his big brother, wherever he may be, is now walking and talking, finally freed from his earthly constraints.
Her grief in losing the child she took care of over 20 years, day in and day out, manifests in unexpected ways, Liz said. When she first wakes in the morning, she prepares to head to his bedroom to do his daily stretches, exercises that kept his body supple. Then it hits her: his bed is empty.
She heads for his bedroom now, to show the wall of decorative crosses that Garrett arranged, crosses from all over the world that people have given Conrad over the years. Liz plans to give away or donate many of his things — the feeding tube machine, the special bed, the diapers — but the wall of crosses will stay, a shrine to her amazing son.
The research of Conrad Smiles will go on as well, because it’s “never just been about Conrad,” Liz said. “It’s about all the other children who can be helped.”
Her son’s smile contained a special message for her.
“You know, we all have junk going on in our lives, we all do, and if my son could smile, well, we can too,” she said.
On the recent afternoon I visited, the kitchen counter in Liz’s home held a half-dozen vases filled with condolence flowers. She said she was getting messages and calls from people, including kids, she doesn’t even know, folks who want to tell her about how Conrad touched their lives.
Liz knows exactly what her son’s life meant.
“His story is about inclusion and kindness, and that’s a message the world really needs right now,” she said.
A celebration of Conrad Tullis’ life will be held on Dec. 18 from 1-5 p.m. at the Mosaic Complex. The event is open to the public. Only one rule: No one should wear black.
Liz Tullis has worked as a consultant to the San Antonio Report.