Epilepsy Takes the Life of a 3 Year Old

On march 9, 1998, the day after my 32nd birthday, I became the happiest person in the world. I found out I was pregnant and due in november. I gave birth to a healthy, happy, 9 pound 2 ounce baby boy, on november 18, 1998, daniel edward wader jr.
Danny and I were visiting the neighbors (a couple in their 80's) on august 30, 1999. Danny was 9 months old and was eating an oreo cookie and making a big mess of himself. After finishing the cookie, I put him in the kitchen sink for a quick bath. As I was taking him out, his eyes rolled back in his head and his body stiffened. I grabbed the phone and called 911.
The paramedics arrived to find my little baby with nothing on and turning blue. He was rushed to the e.R. And was in respiratory failure. Thanks to the heroic efforts of the many nurses and doctors, my little danny was saved. But the rest of the news was not good. I was told danny had epilepsy and he was put in the i.C.U for the next 4 days for further testing.
Danny was diagnosed with idiopathic and intractable epilepsy. We tried many different medications and many tests. Nothing seemed to work. Then things went from bad to worse. At the age of 2, his dilantin level became toxic and he was admitted to the local hospital. There he picked up a rotavirus, which of course, can cause numerous seizures. After a week in the hospital, we were able to bring him home.
The doctors tried many different medications but nothing they did seemed to help our baby. We were on our 9th doctor, and danny had more than 160 grand mal seizures in a 2 year period.
On his 2nd birthday, I took him to get his picture taken. Just before they called his name, he fell to the floor, going into a grand mal seizure. When I tried to reschedule his appointment, they refused.
We also went through this with our family. Danny was the greatest thing since chocolate cake until, yes, that fateful day we found out he had epilepsy. Then it was “who is danny?” so believe me, I understand first hand, all the ignorance some of you are experiencing.
.On december 22, 2001, we decided to let "santa claus” come that night. Our tree was falling apart because of the heat in the house and I just wanted it gone. Danny had the best christmas ever.
On december 26, 2001, danny's epilepsy came to an end, along with his life, at the age of 3. He had a grand mal seizure in his sleep, which flipped him face down in bed.
On december 31, 2001 we laid danny to rest. His pallbearers were the paramedic team that had always transported him to the e.R. He rode from the funeral home to the cemetery in a white ford 350 duelly pick-up truck owned by his cousin. Danny loved trucks, so we thought this was appropriate for his last ride.
The first week in january, I sat down with the local phone book, determined to start an organization called “rocking for epilepsy”, in danny's memory. On june 22, 2002, we held our 1st annual rocking for epilepsy walk in davenport, iowa. About 300 people attended and we raised $10,000 for the epilepsy foundation. We continued to do awareness work in our area, by trying to educate local schools and open eyes and erase the ignorance and stigma attached to epilepsy.
In 2003, I was one of five individuals to win the local jefferson award for “rocking for epilepsy” and the awareness of epilepsy it has brought to this area.
In june of 2003 we introduced “boogabear” (which was danny's nickname) “the traveling epilepsy awareness bear. Boogabear travels the states to visit adults and children with epilepsy. He started his travels in july 2003. Boogabear arrives at homes with a photo album and his journal. Recipients are encouraged to add photos and make their own entries in the journal. He wears his medic alert epilepsy bracelet and brings his “meds” along with him.
Boogabear has made many new friends. In the first year, he has been to over 22 states and 60 homes.
What has kept me going is organizing “rocking for epilepsy” and “boogabear”. I could not have accomplished this without the help and support of my uncle "t". He has always been there when I was in need of a shoulder to cry on.

Jen, mom to danny jr