When doctors couldn’t stop her daughter’s seizures, this mom earned a PhD and found a treatment herself.
Twenty-eight years ago, Tracy Dixon-Salazaar woke to the sound of her daughter, two-year-old Savannah, in the midst of a medical emergency.
“I entered [Savannah’s room] to see her tiny little body jerking about violently in her bed,” Tracy said in an interview. “I thought she was choking.” When she and her husband frantically called 911, the paramedic told them it was likely that Savannah had had a seizure—a term neither Tracy nor her husband had ever heard before.
Over the next several years, Savannah’s seizures continued and worsened. By age five Savannah was having seizures dozens of times each day, and her parents noticed significant developmental delays. Savannah was unable to use the restroom and functioned more like a toddler than a five-year-old.
Doctors were mystified: Tracy and her husband had no family history of seizures, and there was no event—such as an injury or infection—that could have caused them. Doctors were also confused as to why Savannah’s seizures were happening so frequently despite trying different seizure medications.
Doctors eventually diagnosed Savannah with Lennox-Gaustaut Syndrome, or LGS, an epilepsy disorder with no cure and a poor prognosis. People with LGS are often resistant to several kinds of anti-seizure medications, and often suffer from developmental delays and behavioral problems. People with LGS also have a higher chance of injury as well as a higher chance of sudden unexpected death (SUDEP) due to the frequent seizures. In about 70 percent of cases, LGS has an identifiable cause such as a brain injury or genetic syndrome. In about 30 percent of cases, however, the cause is unknown.
Watching her daughter struggle through repeated seizures was devastating to Tracy and the rest of the family.
“This disease, it comes into your life. It’s uninvited. It’s unannounced and it takes over every aspect of your daily life,” said Tracy in an interview with Today.com. “Plus it’s attacking the thing that is most precious to you—your kid.”
Desperate to find some answers, Tracy began combing the medical literature for information about epilepsy and LGS. She enrolled in college courses to better understand the papers she was reading.
“Ironically, I thought I needed to go to college to take English classes to understand these papers—but soon learned it wasn’t English classes I needed, It was science,” Tracy said. When she took her first college science course, Tracy says, she “fell in love with the subject.”
Tracy was now a caregiver to Savannah, who continued to have hundreds of seizures a month, as well as a full-time student, studying late into the night and while her kids were at school, using classwork as “an outlet for the pain.”
“I couldn’t help my daughter,” Tracy said. “Studying was something I could do.”
Twelve years later, Tracy had earned a PhD in neurobiology.
After her post-doctoral training, Tracy started working at a lab that explored the genetics of epilepsy. Savannah’s doctors hadn’t found a genetic cause for her seizures, so Tracy decided to sequence her genome again to check for other abnormalities—and what she found was life-changing.
Tracy discovered that Savannah had a calcium channel mutation, meaning that too much calcium was passing through Savannah’s neural pathways, leading to seizures. The information made sense to Tracy: Anti-seizure medications often leech calcium from a person’s bones. When doctors had prescribed Savannah calcium supplements in the past to counteract these effects, her seizures had gotten worse every time she took the medication. Tracy took her discovery to Savannah’s doctor, who agreed to prescribe her a calcium blocker.
The change in Savannah was almost immediate.
Within two weeks, Savannah’s seizures had decreased by 95 percent. Once on a daily seven-drug regimen, she was soon weaned to just four, and then three. Amazingly, Tracy started to notice changes in Savannah’s personality and development, too.
“She just exploded in her personality and her talking and her walking and her potty training and oh my gosh she is just so sassy,” Tracy said in an interview.
Since starting the calcium blocker eleven years ago, Savannah has continued to make enormous strides. Though still unable to read or write, Savannah enjoys puzzles and social media. She’s “obsessed” with boys, says Tracy. And while Tracy suspects she’ll never be able to live independently, she and her daughter can now share more “normal” moments—something she never anticipated at the start of Savannah’s journey with LGS. While preparing for an event, Savannah helped Tracy get ready.
“We picked out a dress and it was the first time in our lives that we did something normal as a mother and a daughter,” she said. “It was pretty cool.”
This Mom Is On a Mission to End Sickle Cell Disease
[Editor's Note: This video is the third of a five-part series titled "The Future Is Now: The Revolutionary Power of Stem Cell Research." Produced in partnership with the Regenerative Medicine Foundation, and filmed at the annual 2019 World Stem Cell Summit, this series illustrates how stem cell research will profoundly impact human life.]
Kira Peikoff was the editor-in-chief of Leaps.org from 2017 to 2021. As a journalist, her work has appeared in The New York Times, Newsweek, Nautilus, Popular Mechanics, The New York Academy of Sciences, and other outlets. She is also the author of four suspense novels that explore controversial issues arising from scientific innovation: Living Proof, No Time to Die, Die Again Tomorrow, and Mother Knows Best. Peikoff holds a B.A. in Journalism from New York University and an M.S. in Bioethics from Columbia University. She lives in New Jersey with her husband and two young sons. Follow her on Twitter @KiraPeikoff.
Dadbot, Wifebot, Friendbot: The Future of Memorializing Avatars
In 2016, when my family found out that my father was dying from cancer, I did something that at the time felt completely obvious: I started building a chatbot replica of him.
I simply wanted to create an interactive way to share key parts of his life story.
I was not under any delusion that the Dadbot, as I soon began calling it, would be a true avatar of him. From my research about the voice computing revolution—Siri, Alexa, the Google Assistant—I knew that fully humanlike AIs, like you see in the movies, were a vast ways from technological reality. Replicating my dad in any real sense was never the goal, anyway; that notion gave me the creeps.
Instead, I simply wanted to create an interactive way to share key parts of his life story: facts about his ancestors in Greece. Memories from growing up. Stories about his hobbies, family life, and career. And I wanted the Dadbot, which sent text messages and audio clips over Facebook Messenger, to remind me of his personality—warm, erudite, and funny. So I programmed it to use his distinctive phrasings; to tell a few of his signature jokes and sing his favorite songs.
While creating the Dadbot, a laborious undertaking that sprawled into 2017, I fixated on two things. The first was getting the programming right, which I did using a conversational agent authoring platform called PullString. The second, far more wrenching concern was my father's health. Failing to improve after chemotherapy and immunotherapy, and steadily losing energy, weight, and the animating sparkle of life, he died on February 9.
John Vlahos at a family reunion in the summer of 2016, a few months after his cancer diagnosis.
(Courtesy James Vlahos)
After a magazine article that I wrote about the Dadbot came out in the summer of 2017, messages poured in from readers. While most people simply expressed sympathy, some conveyed a more urgent message: They wanted their own memorializing chatbots. One man implored me to make a bot for him; he had been diagnosed with cancer and wanted his six-month-old daughter to have a way to remember him. A technology entrepreneur needed advice on replicating what I did for her father, who had stage IV cancer. And a teacher in India asked me to engineer a conversational replica of her son, who had recently been struck and killed by a bus.
Journalists from around the world also got in touch for interviews, and they inevitably came around to the same question. Will virtual immortality, they asked, ever become a business?
The prospect of this happening had never crossed my mind. I was consumed by my father's struggle and my own grief. But the notion has since become head-slappingly obvious. I am not the only person to confront the loss of a loved one; the experience is universal. And I am not alone in craving a way to keep memories alive. Of course people like the ones who wrote me will get Dadbots, Mombots, and Childbots of their own. If a moonlighting writer like me can create a minimum viable product, then a company employing actual computer scientists could do much more.
But this prospect raises unanswered and unsettling questions. For businesses, profit, and not some deeply personal mission, will be the motivation. This shift will raise issues that I didn't have to confront. To make money, a virtual immortality company could follow the lucrative but controversial business model that has worked so well for Google and Facebook. To wit, a company could provide the memorializing chatbot for free and then find ways to monetize the attention and data of whoever communicated with it. Given the copious amount of personal information flowing back and forth in conversations with replica bots, this would be a data gold mine for the company—and a massive privacy risk for users.
Virtual immortality as commercial product will doubtless become more sophisticated.
Alternately, a company could charge for memorializing avatars, perhaps with an annual subscription fee. This would put the business in a powerful position. Imagine the fee getting hiked each year. A customer like me would find himself facing a terrible decision—grit my teeth and keep paying, or be forced to pull the plug on the best, closest reminder of a loved one that I have. The same person would effectively wind up dying twice.
Another way that a beloved digital avatar could die is if the company that creates it ceases to exist. This is no mere academic concern for me: Earlier this year, PullString was swallowed up by Apple. I'm still able to access the Dadbot on my own computer, fortunately, but the acquisition means that other friends and family members can no longer chat with him remotely.
Startups like PullString, of course, are characterized by impermanence; they tend to get snapped up by bigger companies or run out of venture capital and fold. But even if big players like, say, Facebook or Google get into the virtual immortality game, we can't count on them existing even a few decades from now, which means that the avatars enabled by their technology would die, too.
The permanence problem is the biggest hurdle faced by the fledgling enterprise of virtual immortality. So some entrepreneurs are attempting to enable avatars whose existence isn't reliant upon any one company or set of computer servers. "By leveraging the power of blockchain and decentralized software to replicate information, we help users create avatars that live on forever," says Alex Roy, the founder and CEO of the startup Everlife.ai. But until this type of solution exists, give props to conventional technology for preserving memories: printed photos and words on paper can last for centuries.
The fidelity of avatars—just how lifelike they are—also raises serious concerns. Before I started creating the Dadbot, I worried that the tech might be just good enough to remind my family of the man it emulated, but so far off from my real father that it gave us all the creeps. But because the Dadbot was a simple chatbot and not some all-knowing AI, and because the interface was a messaging app, there was no danger of him encroaching on the reality of my actual dad.
But virtual immortality as commercial product will doubtless become more sophisticated. Avatars will have brains built by teams of computer scientists employing the latest techniques in conversational AI. The replicas will not just text but also speak, using synthetic voices that emulate the ones of the people being memorialized. They may even come to life as animated clones on computer screens or in 3D with the help of virtual reality headsets.
What fascinates me is how technology can help to preserve the past—genuine facts and memories from peoples' lives.
These are all lines that I don't personally want to cross; replicating my dad was never the goal. I also never aspired to have some synthetic version of him that continued to exist in the present, capable of acquiring knowledge about the world or my life and of reacting to it in real time.
Instead, what fascinates me is how technology can help to preserve the past—genuine facts and memories from people's lives—and their actual voices so that their stories can be shared interactively after they have gone. I'm working on ideas for doing this via voice computing platforms like Alexa and Assistant, and while I don't have all of the answers yet, I'm excited to figure out what might be possible.
[Adapted from Talk to Me: How Voice Computing Will Transform the Way We Live, Work, and Think (Houghton Mifflin Harcourt, March 26, 2019).]