Our son Danny died in December of 2009. His death was caused by a seizure experienced while sleeping. Danny was only four years old.
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Mariann and I have since created the Danny Did Foundation. The mission of the Foundation is to prevent deaths caused by seizures. This mission —which is ultimately the mission to cure epilepsy— will one day be achieved via medicinal, surgical, or other technologies. Until then, the Danny Did Foundation holds as its main goals (1) raising awareness of Sudden Unexplained Death in Epilepsy (SUDEP) and strengthening the communication model regarding SUDEP between medical professionals and the families and loved ones of those afflicted by seizures, and (2) the mainstreaming of medical devices for home-use that act as alarm systems for seizure activity . We will pursue these goals with the aim of keeping people alive until the ultimate mission is accomplished.
To achieve our goals, the Danny Did Foundation is engaging physicians and researchers in the fields of neurology and epileptology; we are meeting with medical technology companies; we are consulting with epilepsy organizations; we are talking to our friends, our neighbors, and all those affected by Danny’s story. We are asking doctors to talk about SUDEP, and we are offering ourselves as an outlet to which doctors can steer patients. We are creating informational pieces about safety in epilepsy in general and SUDEP in particular. We are pursuing sensor technology. We are asking why technology for home-use that measures and monitors vital statistics specific to seizure activity doesn’t exist, and we are finding that maybe it does, in one form or another. We are asking why such tools aren’t consistently —and as a matter of protocol— presented as options to parents and loved ones of those afflicted by seizures. We are cutting through the barriers that prevent those who do or should know of these types of technologies and instruments from talking about them to those of us who need to know about such devices. Finally, once identified as viable and worthwhile instruments, we will work to get these products FDA approved and covered by insurance companies.
Our vision is this: One day, in the foreseeable future, a mother brings her child to the child’s doctor. The mother tells the doctor that the child has had a seizure. The doctor informs the mother of the full range of potential outcomes that can result from seizures. Tests are performed on the child. The doctor talks to the mother about long-term medicinal strategies, as well as of immediate options available to the mother for caring for her child at home. The mother and her child then leave the physician’s office. When they do, we see the mother holding her child’s hand, assuring her child that no stone will go unturned in her care for her child. And in the mother’s other hand we see her carrying a device made for home-use that reliably senses seizure activity and sounds an alarm when such activity occurs. It will be analogous to a mother leaving the doctor’s office with an inhaler or a nebulizer after her child’s first bout with asthma.
Danny only had seizures in his sleep, and we were lucky enough on several occasions to catch Danny while he was seizing. At these times we were able to address the seizure. We could protect him. We could time the seizure. We could administer medicine. We could call 911. We were able to address the seizure. A device made for home-use that reliably senses seizure activity and sounds an alarm when such activity occurs will offer the opportunity, at the very least, for a parent or loved one to address the seizure.
The Danny Did Foundation is teaming with individuals and organizations already in the fight to prevent deaths caused by seizures. This fight is one from which we cannot walk away. Mariann and I are leading the Danny Did Foundation in our son Danny Stanton’s honor to promote awareness and to provide support for those connected to the affliction of seizures. We will lead this fight until the fight is finished, and we are leading the fight with this mantra in mind: Example is not the main thing influencing those around you, it is the only thing.
Danny’s example to all of us was that Danny Did take his time in life, Danny Did engage others in his life, and Danny Did enjoy his life. Danny Did, and we can—and will—through time, people, and passion fight to prevent deaths caused by seizures.
Please Go and Enjoy Your Life. Danny Did.
Mike and Mariann Stanton
Mike can be reached at mstanton@DannyDid.org, and Mariann is reachable at mariann@DannyDid.org.
Support Danny Did runners in the Chicago Marathon!
