Our beautiful boy is gone. Kurt was 2-1/2 years old, born June 22, 2002, died April 3, 2005.

Kurt died of SUDEP after a morning waking seizure. Kurt had a seizure upon waking and had suffocated in his pillow, that is how I found him in his crib, still, face down, and not breathing. This is the reality of SUDEP, this is NOT supposed to happen in this day and age and not to one so small and helpless.

Kurt was tired but happy when he went to bed.

Because Kurt's seizures usually happened in the mornings upon awakening, I listen closely to the monitors, but never disturbed him. In the past if I tried to awaken him early he would have a seizure, so I keep the house quiet and would do quiet tasks. I never missed hearing a seizure. Until yesterday, he was quiet so I let him sleep, it got to be a bit later than usual so I peeked in his room and he was face down on his pillow and there the nightmare began. The EMT's, fire dept, state police and sherriff were here in minutes of my call to 911, we were rushed off to UofMichigan. It was the longest ride of our lives, I was calling my husband Erik and other family on the way. The ER staff worked on Kurt for a short while, but the doctor came up to me and told me that Kurt could not be revived and that he probably had already passed away before the EMT's had gotten to our house.

The neurologist that first diagnosed Kurt was in hospital at the time and ironically said to me words that have gotten me through this horrible pain, that Kurt was not meant to continue his fight with Epilepsy anymore.

Kurt touched so many people in his short life, he would walk into a room and bring the sun with him. His friends, teachers and therapists always looked forward to seeing his smiling face come through the door. He was a a rough and tumble little boy, always with a smile. When people comment on Kurt they remember that he was always, always smiling (it was his secrect that life was funny). He stole coins from his Dad's drawer, and teased our blind dog gently, played like a boy with other boys, and was gentle with the girls. His laughter was contagious to everyone. He didn't have much to say verbally but could communicate without words. He liked to be sneaky around the house and would play tease games of hiding behind doors, running away when it came time for a bath. Kurt was beautiful inside and out and is greatly missed by many. Losing a small child is a travesty of nature.

Kurt was first diagnosed with Epilepsy at 6 months of age, previous to that he had 3 seizures which were thought to be apnea attacks related to prematurity. Our family began the very long road dealing with seizures and meds and doctors and therapists. It is a hard road to be on and finding support was sometimes the hardest hurdle, it seems that no one wants to deal with one more special need child. And these are the families that need the most support. You must constantly fight for your needs and rights. My husband and I would gladly make this fight everyday, than be without our Kurt.

Wednesday, June 22, 2005 was Kurt's birthday, he would have turned 3 years old. It was one of the hardest days we have had so far, Erik and I have made it through Easter, Mother's Day, Father's Day, Memorial Day, a burial in Minnesota and this weekend we will have the final burial of Kurt's ashes here in Michigan. We don't know what to do with ourselves, everyday since Kurt died has been painful. Before the days just flew by and now they last forever, with nothing to look forward to.

We remember Kurt with all our love, but our hearts will be missing a piece for the rest of our lives.

Leslie and Erik Haugen