It has been three years since Jennifer and Dan Wader Sr. held their 3-year-old son Danny. Three years, since that fateful Christmas night when Danny went to sleep and never awoke. According to the medical examiner Danny’s death was caused by acute respiratory failure following a seizure. The doctors suspect Danny had a seizure that caused him to roll face-down onto his pillow, which led to suffocation.

The day he passed away, Jennifer said she "awoke at 5 a.m., the time Danny was usually up and jumping on their bed.” But there was no Danny. In a panic, Jennifer ran into Danny’s room and found him lying face-down on his pillow, motionless. Even now, Jennifer is still plagued with the “what-ifs”, “I had trouble sleeping that night and had been in the living room where I could see Danny. For some reason I went back to my bedroom to sleep. I can’t help but wonder if I hadn’t gone back to my bedroom if I might have been able to save him.”

Despite their grief the Waders have created a way to honor Danny’s memory as well as to help educate others about epilepsy by founding a non-profit organization called Rocking for Epilepsy.

Rocking for Epilepsy

“We named it ‘Rocking for Epilepsy’ because Danny was rocked to sleep from the day he was born until the day he died”, said Jennifer. Rocking for Epilepsy is a non-profit foundation created to raise funds and epilepsy awareness. “The mission of Rocking for Epilepsy is to raise public awareness about epilepsy as well as to erase the ignorance and stigmas associated with epilepsy," said Jennifer. In one particular instance, Jennifer recalls the discrimination she and Danny endured while waiting to get Danny’s picture taken at a local photography studio. It was during the waiting period that Danny had a tonic-clonic seizure triggered by the flashing lights of the cameras. When Jennifer went to reschedule she was given the run-around by the staff and refused a second appointment. “People with epilepsy are just like you and me. It’s not contagious, but that’s how people act sometimes,” Jennifer said.

Since its inception in 2002, Rocking for Epilepsy has raised over $10,000 through such events as the Quad-City Epilepsy Walk-A-Thon. Almost all of the proceeds have gone directly to the Epilepsy Foundation to promote epilepsy awareness and to directly support the needs of children with epilepsy.

BoogaBear: The Epilepsy Awareness Traveling Bear

Boogabear is known as The Epilepsy Awareness Traveling Bear and was created by Dan Wader in an effort to bring comfort to children with epilepsy as well as serve as an epilepsy awareness tool. Boogabear, The Epilepsy Awareness Traveling Bear, is named after Danny Wader Jr. whose parents nicknamed “Boogabear” as an infant.

Boogabear started his travels after the death of Danny, on July 1, 2003 and has visited over 22 states. He travels around the USA visiting with children and adults that have epilepsy. He spends 7-10 days with the host and is sent via US Priority Mail, with a return shipping label included in his travel box. Also included in his travel box are a journal, a photo album and meds. Hosts are asked to keep a daily log of activities and time spent with Boogabear. The host can also put pictures in the photo album, which is kept with Boogabear as well. “I am amazed at how well children and adults alike have taken to the bear. I think Jennifer and Dan have found a great way to educate the public about epilepsy because everyone loves the bear and wants to hear his story,” said Michele Freitag, R.N.” Freitag believes that the biggest challenge Rocking for Epilepsy faces is getting sponsors to support Boogabear, but is confident that in time more support will be generated.

Danny’s story

At 9 months of age Danny had his first seizure. It was severe enough to put him into acute respiratory failure. Thanks to the paramedic team and the hospital staff in Davenport Iowa, he survived. However, Danny’s struggle with epilepsy was far from over. In the next two years following his first seizure Danny had over 160 tonic-clonic seizures lasting anywhere from 3 minutes to 1 hour. The Waders went through nine neurologists and went as far as Minneapolis to consult a specialist in child epileptology.

They tried every medication, but nothing seemed to control his seizures. They even explored the option of surgery, but it was decided Danny was not a surgery candidate because of his age. “I think one of the hardest things for Danny and his family was that they never knew when he was going to have a mild seizure or a life threatening one,” said Freitag.

In fact, Danny spent so much time going to the hospital by ambulance that Jennifer and Dan asked several EMT’s to be pallbearers at Danny’s funeral. “The EMT’s came to our home more than two dozen times in two years. “He would have died sooner if it weren’t for those EMT’s, said Jennifer.

Safety measures

There are a few devices that might lessen the chance of serious complications of seizures. One such device is a baby monitor. According to Amy Stein, Education Coordinator of the Epilepsy Foundation of Kentuckiana, “A lot of parents find comfort in using a baby monitor so they can hear if the child is having a seizure and be able to respond quickly.” For children or adults with frequent nocturnal tonic-clonic seizures, either an oximeter (oxygen meter that can be painlessly clipped on a finger) or infrared video camera can help as well. Another option is an Epileptic Bed Seizure Alarm. These seizure alarms are produced and manufactured in the UK by easylinkuk.

How does the seizure alarm work?

According to their product information the sensor detects limb movements produced by tonic/clonic (grand mal) seizures. As the seizure continues, the sensor triggers the monitor circuit, which begins counting movements. When a timed period of movements has been detected (controlled by an adjustable delay control) the alarm signal is generated and transmitted to the alarm receiver or switch cable. An additional sensor, a microphone, detects oral sounds (removed if second bed sensor is fitted). Each sensor has an independent level control that adjusts the sensitivity of the sensors. The delay control can be adjusted so that normal movements during sleep are ignored which helps to eliminate false alarms.

How the Waders are coping

The Waders are still coping with the loss of their son, but say starting Rocking For Epilepsy has made all the difference in helping them heal. Jennifer also attributes her ability to cope with the loss of Danny to her Uncle "T", “It is like Danny passed away and Uncle "T" helped fill part of the void in my heart. He helped me understand and helped take away some of the hurt and pain.” Dan Wader Sr. has found comfort in other ways, “With the birth of a baby boy every father looks forward to the day he can say that’s my boy. With Danny passing many would say that opportunity was taken away, but that’s just not so. Each time BoogaBear comes home and I read his journal I am touched in a way that is indescribable. Danny touched many people in his own special way and I think that's what BoogaBear does for others. When I look at BoogaBear and see how he has touched the lives of those he has visited I can say, ‘That’s my boy!’”

For more info on Rocking for Epilepsy

please contact:

Rocking for Epilepsy

1616 Eastern Av

Davenport, Iowa 52803

(563)323-1733

Rocking4Epilepsy@yahoo.com