Meet Danny

Thanks for taking the time to read a bit about Danny. His life is a commentary on mine, so I’ve thrown in some of my own commentary to your introduction. It’s just a taste. Enjoy.  

~Mike, Danny’s dad.

Daniel George Stanton was born on March 2, 2005. Danny’s birth was successful in every way. He was welcomed home by his sister Mary Grace and his brother Johnny. Happy days.

A wonderfully normal two years of growth and development followed as Danny took his place as kid number three in the Stanton family. He was, as his grandma Murtaugh dubbed him, the “little toughie” of the family. The kid was a scrapper who held his own as he established his place within his family, and although the youngest child, Danny’s levels of affection, compassion, intelligence, and athleticism evened the score on all fronts as he experienced the day-in and day-out of life’s situations. Even at two years of age, the boy had established himself –somehow, and in many ways– as an equal not only in terms of experiencing life, but also as one who brought experience to the lives of his family. Danny was, however, soon enough no longer the youngest Stanton as his brother Tommy came along when Danny was two. Happier days.

We rolled as a sixsome through the city of Chicago in our blue minivan, in our strollers and buggies, and on foot. Downtown, the parks, the beach, baseball games, the pool, pizza parties with the neighbors, school plays, kickball in the front yard, catch in the alley, hoops at the Y, Target, around the block on scooters and bikes and Big Wheels, walks to Happy Foods for donuts . . . the package was complete. Birthdays, holidays, block parties . . . each month brought more punch to us as a family, and each day brought to me a hug from Danny: he’d tuck his arms into his own chest, and then wait for me to surround his body with mine. He’d then nestle his head under my chin, take a deep breath, and let his exhale say that he had found the spot. The happiest of days.

It was at age two when Danny had his first seizure. It was 10:30 at night, on September 20, 2007. He was sleeping next to my wife, Mariann, as she read while in bed. His eyes rolled back and he shook. We did not know what was happening. We dialed 911 then rushed him to our next-door neighbor, who is a paramedic. Danny seized for almost 10 minutes. On that very night, we had a battery of tests done on Danny at Children’s Memorial Hospital in Chicago. There was no known reason or cause found for Danny’s seizure. No injury, no trigger. We were told that sometimes seizures in children have no known cause and that kids often outgrow them. The experience was terrifying.

We left the hospital that night sans any written information about seizures or seizure disorders, sans any mention of epilepsy or epilepsy organizations, and sans anything short of the feeling that we had fallen into a hole that had no bottom. Sudden Unexplained Death in Epilepsy, of course, crossed no lips and fell upon no ears. And of course, as well, this made sense to those who made sense of such matters as we –as adults and as parents– were not prepared, in others’ estimations, nor entitled to such privy information. It was just too early. Too early for prevention?

Danny began sleeping in bed with us after that first seizure.

Danny had a second seizure while sleeping just over a month later on October 29, 2007. Danny was again right there in our bed with us and we able to address the seizure via methods we had learned from doctors. Turn him on his side. Protect him. Call 911 if the seizure lasts for an extended period of time. After that second seizure, Danny had an MRI. Again, no underlying cause was found for Danny’s seizures. Danny was then put on a variety of medicines to control the seizures, and regular EEGs were scheduled and performed. His neurologist determined that he had childhood seizure disorder. Still no mention of epilepsy, still no suggestion of outreach to epilepsy organizations, and still, of course, no mention of Sudden Unexplained Death in Epilepsy. Just more of the same: he’ll outgrow it, many kids experience this, we don’t know why it happens, maybe it’s “his normal.” I am saddened to recall this pathetic drivel. How might life be different had a sophisticated and tough-minded doctor sat me down and said “let me tell you something that will shock you but that I am mandated both by my profession and by my personal sense of duty to inform you of . . . your son may be epileptic, and along with this possible diagnosis comes a plethora of safety issues that you need to become aware of . . . .”

Nighttime was a scary time. Danny continued to sleep in bed with us as we tried various medicines and combinations of medicines. Danny’s day-in and day-out behavior was completely normal. He continued to be athletic, inquisitive, engaging, social, and, more than anything, affectionate. As we continued meeting with Danny’s neurologist for regular check-ups, we became more and more comfortable with the idea that we were doing all we could for Danny and that we were on a clear and well-defined path. We were told that a slightly abnormal EEG might just be Danny’s ‘normal.’ If you, or a loved one, hear this from a neurologist, run as fast as you can in the opposite direction.

After sleeping with us for a half a year, Danny began to return to his own bed. On hundreds of occasions we left our bed to check on Danny, and we frequently just brought him back to bed with us. We caught him twice more having a seizure in his sleep. Once, as his lips turned blue, and while we were screaming on the phone with 911, we got a glimpse of what was to come. Still, there was never the mention from doctors that death could occur. (And yet how did this not occur to us?) We informed our doctors of every event. We continued to trust and to believe that we were doing all that we could. We, I suppose, had ‘turned it over’ to Danny’s doctor, and that was a fatal error. I have learned that doctors are not divine. I have learned as well that the good ones do not want to be perceived as such.

After a year of no known seizures, Danny returned again to his own bed. As he turned four and had gone without a known seizure for 18 months, we thought that our course of action had been successful and that his neurologist was right: Danny would, through medicine and time, outgrow his ‘seizure disorder.’ We were optimistic and giddy. It was like a rebirth for us and for Danny.

. . . . . .

We found Danny’s lifeless body in his bed at 7:15AM on December 12, 2009. That was a Saturday morning. The house became frantic. We attempted to revive him ourselves. Our neighbor the paramedic attempted to revive him. Fire personnel –a couple of whom happened to be guys from the old neighborhood, and one of whom was my brother’s father-in-law– attempted to revive him in our home. Doctors and nurses attempted to revive him at the hospital.

. . . . . .

On the previous Tuesday, December 8, 2009, we had taken Danny for a scheduled appointment with his neurologist. That day, Danny had a one-hour EEG done while sleeping. We met with his doctor after the EEG and went over the results. There was still abnormal activity showing up, but maybe a lesser amount than the previous EEG showed? Maybe, we were told. A little progress, we were told. The medicine was working, we were told. We increased Danny’s dosage that day to accommodate a slight weight gain since his last visit. How we looked at each other and at Daniel as we left the hospital that day.  And how Danny looked back at us: cool as a cucumber, as usual, and ready to get some lunch and back to playing with Tommy.

How many seizures did Danny have that we did not catch? We will never know. I wonder what Danny knew. I wonder what my little, middle boy knew. I remember asking him about the seizures . . . . One thing I do know are the last words to fall upon that little toughie’s ears. They are the words whispered by Mariann to Danny each and every night as she put him to bed: “I love you, sweet boy.” These words were always followed by three kisses: one to the forehead, one to the nose, and one to the lips.

I love you, sweet boy.

And now life continues –in many respects– sans the soft bounce of one little boy’s feet upon the dirt of the Earth, and the family that was is now the family that is. My Danny boy has entered a new phase, part of which is in the form of his organization, the Danny Did Foundation. I remember writing the last line of Danny’s obituary: Please Go And Enjoy Your Life. Danny Did. And I remember lowering Danny’s casket into the frozen ground of All Saints Cemetery on December 16, 2009. And I remember meeting with a lawyer not long after that to discuss our idea of creating an organization dedicated to preventing deaths caused by seizures. And I remember that lawyer asking me what the name of the organization would be. And I remember saying let’s call it the Danny Did Foundation.

Danny Did enjoy his life. Danny Did engage others in his life. Danny Did take his time. Please Go And Enjoy Your Life . . . .