Stephen's Story
written by mom Angie

Stephen was born September 6th, 1997, the happiest day of my life! He was our first child - a pure blessing. At 4 months of age, we began noticing that Stephen was not physically or mentally developing like a 'normal' baby, but the doctors told us kids develop at their own pace, so, we took the doctors word! UNTIL, Stephen had a grand mal seizure and was rushed to the hospital.

Doctors ordered a CT scan and an EEG-both being extremely abnormal. Friday, February 13th, 1998, our world was smashed. We were told that Stephen had a rare brain disorder called Lissencephaly... his brain had not completely formed the way it should have; instead of convolutions on his brain, his brain was completely smooth.

Our Stephen was severely mentally and physically disabled, he would never walk or talk...we had come to terms with that and love him regardless... he is our ANGEL! Stephen still functioned at a 7 month old level. He sucked his thumb, rolled all over the place, and lit up the room with his smile. Although, I have been told that children with Lissencephaly have a very low survival rate due to feeding problems, aspiration and pneumonia, the average age of death is 2 years. Stephen had uncontrollable seizures & Infantile Spasms. Anti seizure medications worked for a little while and then seemed to stop.

On November 6th, 2003, we awoke to find our little man 'gone' - he received those wings he had worked all his life for ~ he became a true Angel! Even though given the survival of children with Lissencephaly, we were quite shocked and not in any way expecting this to come. He had actually been doing pretty good the months up to his departure. I still find it hard to believe he is gone, I miss him and ache to hold him with every breath I take.

Without saying a word, he could bring a smile to your face and heart - Stephen was nothing less than a pure heart and soul. He never asked for anything, but gave so much to all who knew and loved him. If ever in our lives things seemed dark, Stephen would make it all go away with his innocent smile and contagious laugh, a laugh that simply made everything better. Stephen's love was unconditional, he loved at the hardest of times; and all he wanted in return was the love of others and for those who did love him, their lives were indeed, touched by an Angel sent from above. In his six years of life he showed us more courage and strength than most of us will ever show in a lifetime.

It is better to have known him for such a short of time and feel the aching in our hearts as we grieve, than to never have known his love at all!

I miss you Bubbie!!!