A Grandmother's Story
Charlotte Kappler was on her way to the top in the banking profession when life took an unexpected turn. Her grandson, Matthew, was born on February 1, 2002 to her teenage daughter, Mary, and there were complications that no one expected.
"We were told we had a healthy, six pound, fourteen ounce baby boy. The next day he was taken to the nursery for the basic tests. Upon measuring his head, they noticed it measured below normal. They kept him a long time. They did a CT scan and we got the news later that day. Our pediatrician said he had microcephaly and a brain abnormality. She referred us to a neurologist, and we found out he has schizencephaly, lissencephaly and polymicrogyria."
Schizencephaly is characterized by abnormal clefts in the brain's cerebral hemispheres, lissencephaly is also known as "smooth brain" because the normal gyrations are not present, and polymicrogyria is the presence of many small folds in the surface of the brain. The diagnoses carried with it the prediction of a shortened lifespan.
Charlotte explains, "Only the back of Matthew's brain is the way it should be. He has optic nerve hypoplasia and was blind, but he is using peripheral vision to his right. We know he can see, but we're not sure how much yet. This comes with spastic muscle tone and seizures."
The challenges that a baby with multiple special needs brings were too much for his very young parents, then only seventeen and nineteen. "Ganny" Charlotte stepped up to the plate, quit her job, and became Matthew's full-time caregiver.
She says, "My life has been totally turned around because of Matthew. At first I felt sorry for him, cried all the time and questioned God. I took him straight to my church and right up to the altar when he was just five days old."
That altar call changed Charlotte's perspective from sadness to appreciation. She became aware that even the most disabled of children have a purpose to fulfill in the world. Her previous focus on the material aspects of life-- new cars, nice homes...faded. She now considers family and the time she spends with them as the most important part of living.
Charlotte's youngest son, Korey, is fourteen and he helps a lot with his nephew.
"He wrestles with him and tickles him until he'll laugh so hard he just can't take anymore. He sits in Korey's lap while he watches wrestling on television," she says.
Matthew has already surpassed the expectations that doctors gave him. He can roll, walk with a walker, he does have some vision, he responds to voices and familiar sounds (he giggles and squeals when he hears the bath water running), and he's using his hands more every day.
"He's 24 pounds and as healthy as can be," says Charlotte. "Matthew goes to church with me three days a week. Every service, no matter if there is an alter call or not, I go for prayer. Most of the time on Sunday morning all of the little children follow us and they pray heart-felt prayers for him. I believe God hears the prayers of innocent children before he hears ours. Prayer was and still is the key to all of my questions I ever
had about Matthew."
For more information about lissencephaly, visit The Lissencephaly Network
Written by Carolyn Murray
