Our son Danny died in December of 2009. His death was caused by a seizure experienced while sleeping. Danny was only four years old.
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 be achieved via medicinal, surgical, or other technologies. Until then, the Danny Did Foundation holds as its main goals (1) advancing awareness of epilepsy and of Sudden Unexplained Death in Epilepsy (SUDEP), and enhancing the SUDEP communication model between medical professionals and those afflicted by seizures, and (2) the mainstreaming of seizure detection and seizure prediction devices as well as other technologies that may assist in preventing deaths caused by seizures.
We pursue our goals with the aim of keeping people alive until the ultimate mission is accomplished, and we lead this charge with a single mantra in mind: Example is not the main thing influencing those around you, it is the only thing. To achieve our goals, the Danny Did Foundation engages physicians and researchers in the fields of neurology and epileptology; we meet with medical technology companies; we consult with epilepsy organizations; and we talk to our friends and to all those affected by epilepsy and by Danny’s story. We constantly ask doctors to talk about SUDEP, and we offer ourselves as an outlet to which doctors can steer patients for information regarding SUDEP. We create informational pieces about safety in epilepsy in general and about SUDEP in particular. We pursue the development and advancement of seizure detection and seizure prediction technologies.
We have asked why technology for home-use that measures and monitors vital statistics specific to seizure activity doesn’t exist, and we have found that it does exist, in one form or another. We have asked 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. And we have stood up, we have opened our mouths, and we have offered our demanding voices as leaders in the research, the development, and the availability of such devices.
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. It’s not so complicated, is it?
. . . . . .
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 offers the opportunity, at the very least, for a parent or loved one to address the seizure. Danny, afterall, did not die on any occasions that we were able to address a seizure in progress.
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 succeed in our mission 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.
