All of us who live with Epilepsy…or care for someone living with this disease fear the unknown. Perhaps one of the greatest mysteries surrounding Epilepsy and seizures is SUDEP or Sudden Unexplained Death in Epilepsy. There is no known cause and like Epilepsy itself, no cure.
It’s rarely mentioned…until it grabs hold of a family and snatches a life.
That’s exactly what happened to a Chicago-area family in December 2009 when Danny Stanton died in his home, shortly before his 5th birthday. His death was caused by a seizure experienced in his sleep. His parents, Mike and Mariann Stanton, along with their other 3 children, quickly formed the Danny Did Foundation with the mission to not only prevent deaths by seizures, but to create more awareness of SUDEP.
They’ve caught my attention. Not only did I contribute to the organization…but I’m amazed at their dedication and their commitment to making sure more people are aware of SUDEP. Even in their time of mouning, they forge ahead.
Mariann Stanton was kind enough to answer a few questions for me, and frankly the world….
Q. Mariann…Thank you for talking to me today. I know your organization is so new, but you are already doing such a tremendous job reaching out to people and making important contacts.
A. Thank you for helping us spread the mission of the Danny Did Foundation, to prevent deaths caused by seizures. The Foundation is named after our four year-old son Danny who died from a seizure while sleeping. As with many organizations such as ours, the reason driving the mission gets lost, yet I am determined to keep Danny, who will foremost and forever be our son, a brother, a nephew, a cousin, and grandchild, at the forefront of every conversation I have about the Danny Did Foundation.
Q. As a family who has suffered an incredible loss–and so recently…can you tell us how you and your children and doing?
A. The only way to describe how our family feels about losing our little Danny is pure devastation. Mike and I knew this unthinkable loss could obviously and easily tear our family apart, and we decided that was not an option for us. Our children are at the forefront of everything we do and we say; we know it is our responsibility to continue with routines and schedules despite our constant grief. Mike and I cry privately and publicly. We are teaching our children through example that it is important to express happy and sad feelings, and right now Mom and Dad are sad a lot, but despite our sadness, Mom and Dad will always be able to take care of them. They too are heartbroken. Each one had and now has a different relationship with their brother Danny, so we talk constantly about him, knowing the therapeutic power of simple conversation. It is natural for us to talk about Danny. Danny is a part of our family. We along with Danny need to live. My husband sums it up perfectly in a journal piece: “So here we go. Mariann and I, Mary Grace, Johnny, and Tommy. And Danny, too, because we don’t go anywhere or do anything without Danny. Just the way it’s always been, and the way it’ll always be. With every ounce of strength we have, we empower our children to live because that is what Danny did, and he would have it no other way.
Q. SUDEP is one of the greater mysteries in the Epilepsy community. How do you think you can help bring more attention to SUDEP and also help others who may have lost someone to this or frankly fear it?
A. Awareness of SUDEP is one of The Danny Did Foundation’s two main goals. We know there is a need to strengthen communication regarding Sudden Unexplained Death in Epilepsy (SUDEP) between medical professionals and the families and loved ones of those afflicted by seizures. Our conversations with doctors from various hospitals has centered around SUDEP, or Sudden Unexplained Death in Epilepsy. Why, we are asking, don’t doctors routinely inform the families of those afflicted with seizure disorders about the possibility of death? We have heard a variety of answers, most of which center around talk of statistics and how rarely SUDEP occurs. Well, Danny was that ‘rare’ statistic, and so that argument doesn’t sit well with us. We have found, though, that most doctors do want to talk about SUDEP, but just don’t know how or when. The Danny Did Foundation has offered to step into this role, along with the Epilepsy Foundation of Greater Chicagoloand. Together, we are currently in the process of figuring ways to create materials that doctors can provide to patients afflicted with seizures and which offer the full range of possible outcomes associated with seizures, including SUDEP.
Simple and obvious to us: hey doctors, talk about SUDEP to your patients! Sadly, we are learning that doctors rarely discuss SUDEP because they believe it is too alarming for parents to hear and claim SUDEP is so rare it need not be addressed. The Danny Did Foundation will be the SUDEP advocate for parents. We know we have to inform the doctors that parents want this information, and, yes, it might be frightening for parents to hear, however, even more frightening is the loss of a child due to lack of information that was just too difficult for a doctor to discuss. I know Mike and I wanted this information, but because our doctor never mentioned SUDEP, we were not given a chance to save little Danny’s life. Armed with this information, parents can take action if they choose. Based on the traffic and feedback of The Danny Did Foundation Facebook Page and dannydid.org, we know Danny has educated so many about SUDEP already. Parents are walking into their doctor’s offices talking about Danny and forcing their doctors to talk about SUDEP. It is a legitimate fear of parents, but now because of Danny they are in a position to make changes in the way they address their child’s seizure disorder if they feel the necessity. It is so confusing to contemplate a parent who would not want to know about SUDEP, and part of our mission is to make doctors aware parents want and need to know about it.
Q. What drove you to start the Danny Did Foundation…and, so soon after you lost your son? What are some of your plans for the organization?
A. Creating The Danny Did Foundation was instinctive. Mike and I wondered how this could have happened to Danny when we strictly followed every direction from his neurologist; we closely monitored his behavior, we routinely made all the scheduled EEG appointments, and we methodically gave him his daily medication. Both of us thought that if we had known Danny was having a seizure we could have addressed it, and then we realized with the onslaught of technology there must be a device available that can detect seizure activity while a person is sleeping. If Mike and I had a chance to address Danny’s seizure, Danny would have had a chance to live. He would have had a chance, but because Danny’s neurologist never discussed SUDEP or a device to alarm us of seizure activity while Danny was sleeping, the need for a foundation dedicated to these two objectives never entered our minds until it was too late. Thus began our journey with Danny as the force behind it all. Many ask how have Mike and I been able to begin to help others so quickly after this unfathomable devastation. Danny is driving us. We can because Danny Did in his life, and we can too!!!!