By Gina DeMillo Wagner

 “Switching from a typical baby monitor to the SAMi has been amazing. It has given us data and validation. It is a powerful tool - built by a family like ours for a family like ours. Finally, I can sleep soundly knowing that SAMi is alert and alarmed.” - Laura Will, mom of Alden who has epilepsy due to a rare condition. 

When Charles and Cynthia Anderson’s son James started having seizures in childhood, they struggled to get an accurate diagnosis. At first, they thought the seizures only happened during the daytime, until a family trip required them to sleep in one room and they realized James was also having episodes at night. Doctors initially thought he was sleepwalking or experiencing a sleep disorder. The family was referred to a variety of specialists, including a psychiatrist, to try to diagnose the problem.

It wasn’t until Charles and Cynthia captured one of the nocturnal events on video that a neurologist confirmed they were indeed seizures. Having that documentation was the key to unlocking an epilepsy diagnosis for James. 

“We were relieved to have the diagnosis,” Cynthia recalls, “but our sleep really suffered.” Charles and Cynthia found themselves waking frequently to check on their son, using a baby monitor to try to respond to his seizures, and waking up at every little sound or movement he made. 

The Andersons, desperate for sleep, thought there had to be a better way. They experimented with wearable devices, security cameras, baby monitors, and mattress movement monitors. But nothing worked to capture the unique movements and warning signs of a seizure. “We became accustomed to sleeping with the baby monitor pressed against our ear, and even considered having James sleep in our room at one point. However, neither option felt sustainable,” Cynthia remembers. So, they decided to invent a solution themselves, a sleep activity monitor they called SAMi. Charles used his expertise as an engineer to develop a prototype of the camera and software that would document James’s sleep and sound an alarm if he began having a nocturnal seizure. 

The family had several goals in developing SAMi: to keep their son safe, to understand what was happening at night, and to document a recorded history of these nocturnal seizures to help them better communicate with the medical professionals who could help. But they also wanted SAMi to help other families too. 

“In 2011, we participated in the Epilepsy Foundation’s first ever Shark Tank competition,” Cynthia says. They ended up winning and used the funding to make SAMi a real product that families could order and use immediately.  

The Importance of Documentation

One of the biggest challenges patients face on the journey to a diagnosis is documenting symptoms and describing them to doctors. Time is of the essence. The sooner you know what’s going on, the sooner you can treat it. This is especially true for seizures, Cynthia notes, since untreated seizures can cause damage to the brain.

“You have to have a receptive medical team,” Cynthia says. But even when they’re receptive, they may not understand what you’re experiencing without documentation. “With SAMi, instead of miming or acting out what you saw last night, you can show them the video and data,” explains Matt Anderson, Cynthia’s older son, who manages the business and partnerships. 

The at-home technology removes another barrier for many families: the cost of inpatient monitoring. Staying overnight at a hospital or sleep research facility isn’t feasible for many patients, and insurance may not cover the cost. 

Another benefit to the SAMi device is that it allows patients to observe changes in their seizure profiles and the effects of different treatments and medications on the seizures. This gives medical and care teams a more complete picture of what’s working and what isn’t. 

The Future of Monitoring Technology

The Andersons hear inspiring stories not just from families living with epilepsy, but a variety of sleep challenges. Their devices have been used by people with restless leg syndrome, cerebral palsy, mitochondrial disorders, traumatic brain injuries, sleep apnea, and more. “Increasingly, we’re hearing from families who have a child with autism,” Cynthia says. “They tell us SAMi helps as a bed exit alarm, and we’re working on making that an actual setting in the app.”  

In the future, they plan to offer a version of SAMi that’s compatible with Android devices (the camera is currently compatible with iOS, or customers can buy a kit that includes a camera and tablet). They’re also working on partnerships to capture real-time, reliable biometric data that can detect and record the specific heart rate and respiratory changes associated with seizures. “Right now, most wearables are made for adults and capture biometrics related to fitness,” Matt notes. “But there’s a difference in the heart rate fluctuations for an athlete and what happens during a seizure.”

Also on the horizon: Patients will be able to use a web platform to collect all their data in one place, analyze it, and share it directly with their care teams. It’s an exciting time to be working in this space, Matt explains. Remote Monitoring Technology is allowing families and patients to gather more data and documentation from home, which gives doctors and researchers a better window into rare conditions than ever before. 

It also puts more control and information into the hands of patients and caregivers, who are the first line of help. Plus, the aggregate of data should allow researchers and doctors to better advocate for new treatments and funding on a national level.

At the end of the day, better monitoring means better safety, Matt notes. “Our goal is to help parents get a better night’s sleep, safely.”

• Learn More at SAMiAlert.com

• To connect with other families experiencing epilepsy, rare disease, or sleep issues, visit the Know Rare community platform.