One of the first things that occurred to us after Danny died was that there must have been something we could have done that might have spared us this tragedy. That ‘something’ seemed so simple: a device that can reliably sound an alarm when seizure activity occurs. Our thoughts at first centered around a device that attached to a person and monitored vital statistics, like a pulse oximeter. Such a device, we figured, would at the very least provide parents and loved ones of those afflicted with seizures during sleep the opportunity to address the seizure. And having the ability to address the seizure beats not knowing that a seizure is happening, regardless of the outcome.
So we looked around for such a device. In doing so, we came across the Emfit Movement Monitor and were intrigued. Could a technology like this work? Would its calibration be sensitive and specific enough to prohibit too many false-positive alarms? We got one and tested it out. We showed it to medical experts who also happen to be our neighbors. We were all immediately impressed.
Widely used and marketed in Europe as an Epileptic Seizure Alarm, the U.S. version of this model is the Movement Monitor. Danny Did Foundation has worked to get this product tested and analyzed in clinical settings. In January 2013, the Journal of Child Neurology published results from a trial run by the Division of Pediatric Neurology at University of Tennessee Health Science Center in Memphis, TN. You can see an abstract from that study here. In June 2013, Epilepsy & Behavior published the results from an adult study run at Northwestern Memorial Hospital in Chicago. You can see an abstract from that study here.
Please visit the Emfit website to consider this product for yourself. We encourage you to research this technology and to contact Emfit with any questions regarding the workings of the device. The device requires repetitive movement in order to alarm. And to be clear, this device does not prevent seizures and it does not prevent SUDEP. To view a YouTube video that overviews how to set up the Emfit device, click here.
NOTE: Emfit offers a 10 percent referral discount to anyone who mentions Danny Did Foundation when placing an order. If placing the order online, enter the coupon code “dannydid” to receive the referral discount. As a secondary option, you can contact the Danny Did Foundation at firstname.lastname@example.org for assistance in acquiring an Emfit Movement Monitor if this product seems right for you but dire financial constraints are an impediment. In deference to the best use of our funds, we aim to reserve this option for families who are most in need.