http://takeonepilepsy.com/sites/default/files/articles/banners/2019-05/Picture9.png
#EQUIPMENT

SUDEP: what you don’t know can hurt you

Mike Stanton is co-founder of the Danny Did Foundation, which he started with his wife, Mariann, after they lost their son to Sudden Unexpected Death in Epilepsy, or SUDEP, on December 12, 2009, three months before his fifth birthday. Tom Stanton is Mike’s brother and the foundation’s Executive Director. They both live with their families in Chicago, Illinois.

 

How the family behind the Danny Did Foundation learned about SUDEP and embarked on a mission to ensure every family who can benefit from a seizure detection device can gain access to one

 

Mike: Apart from the booming thunderstorm that rumbled through Chicago on the day of his birth, my son Danny’s entrance into this world was relatively uneventful. His first couple of years, too, were fairly normal. He easily hit the early milestones: crawling, walking, talking. And, as much as is possible in the first two years of human life, he exhibited a warmth, compassion, and intelligence in line with that of his older brother and sister.

Danny was an engaging, social, athletic little boy. He loved playing baseball and delighted in zipping around our block on his bike. He chased lightning bugs on warm nights in the summer and dressed up as a Power Ranger for Halloween. He enjoyed music—Taylor Swift’s “Our Song” and Kenny Chesney’s “Summertime” were among his favorites—and he was fearless, flying as high as he could on the swing set in our yard. He liked to sport tank tops and flip-flops, his go-to hairstyle was a buzz cut, and he was the main man when it came to helping our neighbors carry groceries in from their car.

Photo of Little Boy

 

Danny was also wildly affectionate, and there was no one he was more devoted to and tender with than his mother, Mariann. They were joined at the hip, pinballing through our neighborhood together. He was her constant wingman and she was his biggest fan. When Danny played baseball—at the park where diamond #1 is now designated as “Danny Stanton Field”—Mariann was always there.

As far as we knew, Danny only experienced a handful of seizures during his nearly 5 years. And they all happened while he slept. His first seizure occurred when he was 2. He was asleep next to Mariann while she read a book in bed when, suddenly, his eyes rolled back in his head and he began to shake. We dialed 911 and then rushed him to our next-door neighbor, a paramedic. Danny seized for almost 10 minutes, after which point we brought him to the hospital. While there, he underwent a battery of tests, but no cause was identified. We were told, simply, that seizures in children sometimes just happen, and that Danny will probably outgrow them. Even so, from that night forward, I slept by his side.

As Danny continued to experience seizures while sleeping over the next few years, he was put on a variety of seizure controlling medications, and regular EEGs were performed. His neurologist diagnosed him with Childhood Seizure Disorder, but still assured us that this was something Danny would likely outgrow. Day-to-day life continued pretty much as normal. Bikes were ridden. Baseball games were played. And through it all, Mariann and I persevered, trusting the doctors, trusting that we were doing all we could to keep Danny’s seizures at bay, that we had all our bases covered. I continued to sleep by Danny’s side, so I could intervene if he seized, and be there in his time of greatest need. Never once did his doctor utter the word “epilepsy,” and he certainly never alerted us to the possibility of SUDEP.

 

“I continued to sleep by [Danny’s] side, so I could intervene if he seized, and be there in his time of greatest need. Never once did his doctor utter the word “epilepsy,” and he certainly never alerted us to the possibility of SUDEP.”

            –Mike Stanton

 

A few months before Danny turned 5, he hit a milestone: one whole year of no known seizures. Shortly thereafter, we took him for a scheduled appointment with his neurologist and Danny underwent a one-hour EEG while he slept. The results showed that he still had abnormal activity, but less so than on previous EEGs. This was progress, we were told. Time and medication had done its job, and Danny was cleared to go back to his own room, back to the bottom bunk of the bed he shared with his brother. The news was like a rebirth for us. Our course of action had been successful and we were elated.

Four nights later, after a ceremonious return to his bottom bunk, Danny seized in his sleep and was found unresponsive by Mariann the next morning. She brought him to me and I attempted to resuscitate him. Over and over again I begged him to breathe, but he was gone.

As you can imagine, Danny’s passing incited an enormous ball of rage, depression, unease, and hopelessness to form inside me. Even today, ten years later, each of those emotions remains at various stages of resolution. They say the passage of time facilitates acceptance, but all I have come to accept is the fact that heartbreak, and all its accoutrements, is very simply something that requires continuous management. Even so, the concept for the Danny Did Foundation came to me just a few days after his death, when I was completely consumed by this one, nagging thought: if only we’d had a device that monitored Danny’s seizure activity while he slept. Then maybe, just maybe, it would have alerted us to his final seizure, and we could have tended to him before it was too late.

 

“They say the passage of time facilitates acceptance, but all I have come to accept is the fact that heartbreak, and all its accoutrements, is very simply something that requires constant, continuous management.”

            –Mike Stanton

 

A week later, when a reporter from the Associated Press called and asked if I’d given any thought to Danny’s legacy, after speaking on autopilot for 30 minutes about Danny’s life (clearly still in a state of shock about the fact that he was no longer here) I unexpectedly found myself saying the following: “I am planning on starting an organization in Danny’s name that will assist people who suffer from seizures while they sleep and will work to prevent the deaths caused by those seizures.” And though unplanned, once I’d uttered the words, there was no turning back. One month later, Mariann and I founded the Danny Did Foundation.

Tom: Our mission at Danny Did is simple: to prevent deaths caused by seizures. Seizures are a manifestation of epilepsy, which is a neurological disorder that impacts nearly 3.5 million Americans. To support our mission, we have three primary strategies: to gain mainstream acceptance and use of seizure-detection and seizure-prediction devices; to encourage medical providers to have more honest conversations about the risk of SUDEP with epilepsy patients and their families; and to advance public awareness of epilepsy and SUDEP. Through this three-pronged approach, we aim to prevent as many seizure-related deaths as possible.

 

Strategy 1:  Utilize technology to manage epilepsy

Mike: At the core of the foundation is our grants program. We provide financial assistance to qualified families in need of seizure-detection and seizure-prediction devices for individuals and families who are financially constrained. These systems provide added safety for the person being monitored and peace of mind for their parents and relatives.

Tom: Before we get to the point of funding a grant request, much of our work involves helping a patient or their caregiver to align their individual circumstances with a monitoring system that fits their needs. Every family we encounter is coming to us with a degree of desperation—they want something, anything, to help them—and a lack of clarity sometimes accompanies that desperation. We try to help them to take a pause, step back, and make sure the system they’ve chosen is the best one for their situation. Once they determine the right fit, we don’t want money to be the element holding them back. Which is where our grants funding comes in. We believe this program has a direct, near-term impact on families who face epilepsy. It’s our calling card.

Mike: To date, we’ve funded grants for seizure detection/alert devices to families across all 50 states and 11 countries worldwide.

Tom: We consider this a tremendous accomplishment, and the most tangible way that Danny continues to make his presence felt.

 

Strategy 2: Encourage SUDEP straight-talk

Tom: Before Danny Did, my background was in public relations, and I always say there’s a branding issue of sorts that has plagued the epilepsy community. Doctors use a range of terms to explain seizures to families—terms that allow them to avoid using words like “epilepsy” and “SUDEP.” While these terms may serve to soften the blow at the time of diagnosis, one result is an ongoing lack of understanding and clarity among families about what they’re actually facing.

Mike: Our doctor likened Danny’s seizure to accidentally sticking a finger in an electrical socket. It left us thinking, “Well, that sounds pretty benign.”  But the dangerous truth is that it restricted us as parents and caregivers. Had our doctor used words like “epilepsy” and “SUDEP,” we would have immersed ourselves in the epilepsy community, researching all we could and benefiting from the resources that immersion would have afforded us. In short, we would have known about the risk of sudden death, and we would have taken steps to try and minimize that risk.

Tom: Most of the families we meet either hear about SUDEP from us, from other parents, or from social media—if they’ve heard of SUDEP at all. The unfortunate reality is that conversations between families and doctors about SUDEP usually don’t happen unless the patient is extremely high risk. So, the onus, unfortunately, often falls on the families. As advocates, we encourage an open and honest two-way conversation between doctors and parents about SUDEP. For everyone to know and acknowledge sudden death as one possible outcome, and to discuss the risk level for the person involved. You can only shape the best treatment plan once everyone is fully informed.

Mike: I encourage anyone responsible for a child experiencing seizures to engage their doctors about the broad range of outcomes that can occur. And couched in that conversation should be a question about the risk of SUDEP. This is a legitimate and important topic for a caregiver to raise with their doctor.

 

“We encourage an honest two-way conversation between doctors and parents about SUDEP. For everyone to know and acknowledge sudden death as one possible outcome, and to discuss the risk level for the person involved. You can only shape the best treatment plan once everyone is fully informed.”

            –Tom Stanton

 

Tom: When you are diagnosed with a disease, it is typically followed by a conversation about possible outcomes. But that  isn’t the norm with epilepsy. There are various reasons we’ve heard why this is the case, but none of them are acceptable as far as we’re concerned. There needs to be communication about the risks before solutions can be achieved, and sharing knowledge is the starting point. Disclosure about SUDEP has gotten better in the last 10 years, but there are still gaps. We see it as part of our responsibility as an organization to bridge those gaps.

 

Strategy 3: Make SUDEP a household name

Mike: When we started the foundation, my wife and I promised that we’d nurture it and develop it as if it were Danny’s continued place in the world. And as a result, over the last 10 years, we have aggressively advanced epilepsy, and SUDEP awareness across social media, in schools, and in various forms of marketing to the general public. We’ve launched 14 public awareness campaigns to grow understanding about seizures, epilepsy and SUDEP—campaigns that ranged from digital to social media, radio, billboards, and even a yearlong effort at O'Hare Airport―that reached an audience of over 11.5 million people. We’ve sponsored and participated in conferences, sent 25 families to Epilepsy Awareness Day at Disneyland, supported initiatives to educate patients and medical professionals about SUDEP, as well as public policy, government regulations, and legislation to combat epilepsy. And, of course, we’ve advanced awareness about the most promising technologies and devices designed to assist people with epilepsy, their caregivers, and their doctors.

Tom: It is important to us that our impact on the epilepsy community is tangible. The testimonials page on our website is just a sliver of the feedback we receive. Danny is touching each family we help. He’s present. And often times, the people we’re helping are children, which reaffirms that he is at the forefront of who we are and what we do.

Mike: It’s really true, and it’s what has been most astonishing—and uplifting—through this whole journey: that the death of one little boy could trigger such a monumental shift in the way that patients, parents, and medical professionals talk about epilepsy. As for me, on the day Danny died, I changed as a person at an atomic level. And, consequently, so too did every single one of my relationships. The storyline of my life —wife, four kids, nice house, good jobs, great friends—was completely shattered. And I’ve learned that a shattered story does not reconstruct to its original narrative, that a renewed pursuit of happiness is an elusive affair, and that a daily awareness that Danny is dead is an entrenched, problematic, and bewildering part of my everyday life. Still, through my work at the Danny Did Foundation, Danny’s energy is constant. And because of his continued presence in my life, I endeavor to help save other families from the experience of losing a child and I strive to ensure that parents of children afflicted by epilepsy have everything they need to keep their kids safe. And for that, I say to Danny: I couldn’t do it without you, kid. I love you today, I'll love you forever, and you are the root of so much good in this world.

 

Family Photo

 

 

While no device has been proven to prevent SUDEP, the right device can enable early intervention during a seizure, which is believed to reduce epilepsy-related risks. This is why a big part of our work at the foundation is to help families identify which device is the best fit for them. Once they do, we don’t want price to be a barrier. Which is where our Danny Did Grant Program comes in. With this program, we’re able to provide financial assistance to qualified individuals looking to gain access to a range of seizure detection and prevention devices, including:

 

  • The SmartWatch Inspyre™: detects repetitive shaking motion and sends a signal to an app running on the user’s device which triggers a text and phone call alert
  • Emfit®: a non-invasive mattress-based detection device that monitors for movement activity during sleep
  • SAMi–The Sleep Activity Monitor: monitors for abnormal movements at night via infrared video camera; app records and analyzes video and sounds an alarm when an unusual activity is detected
  • PulseGuard™: a monitoring system designed to detect seizures that are associated with a rise or fall in a heart rate
  • Embrace Watch: detects and alerts for tonic-clonic seizures and transmits data to a paired smartphone and alert others via a text message and phone call

 

Visit the Danny Did Foundation website to learn more about these and other seizure-intervention devices, as well as the Danny Did Grant Program that provides financial support to families who need help paying for medical and seizure-management devices.

 

Download helpful resources about epilepsy and SUDEP.

 

Disclosure: The Danny Did Foundation cautions that not all devices listed here are approved by the United States Food and Drug Administration. Unless noted, these resources are consumer products and not medical devices. Further, the Danny Did Foundation encourages and strongly recommends your communication with the manufacturers of these products, as well as consultation with doctors, to determine the possible efficacy and safety considerations of such devices for your situation.

 

 

 

 

The views and opinions expressed in articles on this site are those of their respective authors and do not necessarily reflect the views of Greenwich Biosciences or any of its affiliates. The authors of these articles have experience in the topics they are writing about. Although the advice, tips, ideas, approaches, or resources mentioned in these articles worked for their respective authors, they are not necessarily endorsed by Greenwich Biosciences, and may not be appropriate for you. Talk to your/your child’s doctor before making changes to any treatment plan.