During the first year of development, mom was a little concerned because I seemed to do some major milestones later than what is typical. She began to voice her concerns to my pediatrician and at first, everyone thought that all was ok. They were told that I would do things in my own time. I did accomplish a lot of things in my first 18 months. I learned to sit on my own at about 8 months, crawled on my hands and knees at about one year, and took my first independent steps on Thanksgiving day (2002), when I was 17 months old. Although mom and dad were so proud of me for learning to do all these things, mom was still concerned that something else was wrong. But what? She had read a lot of things on developmental delays, but nothing seemed to fit my characteristics. After another conversation with my pediatrician in December of 2002, he decided that it would be a good idea to order an MRI of my head. As if pictures of my smiling face weren't enough, they had to get some pictures of what was inside!! Well, on December 30, 2002 the results of the MRI were back and everyone was surprised to learn what was wrong.
Although there are different terms to describe what I was born with, the most common umbrella term is lissencephaly. Lissencephaly is a birth defect that happens during brain development in the first/second trimester of prenatal development. Basically, something happened to disrupt the normal migration of the cells to form all the little ridges and valleys of my brain. The front of my brain looks pretty good, but the back and sides are smooth (agyria) or only have large folds (pachygyria). Within lissencephaly, there are a lot of different types, but my type is called Isolated Lissencephaly Sequence (ILS). ILS means that I do not have any other underlying conditions except the improper brain development. Within ILS, there are "grades" to determine the severity of the brain affected. Grade 1 is where the entire brain is smooth and grade 6 is the most mild form of ILS. Having met with some leading experts at a conference for lissencephaly last summer, they said that I seemed to be a mild grade 4. Below, I have listed some links about lissencephaly that mom and dad have found useful. Please visit them if you would like to learn more about lissencephaly.
I am now 2 1/2 years old and am coming upon the first anniversary of my diagnosis. One of the most common characteristics of lissencephaly is the appearance of seizures at an early age. To the best of everyone's knowledge, I have never had a seizure and the EEG test they did on me at 2 years old came back normal. Mom and dad are told that it is very possible that seizures will develop, but they are grateful for every day that I remain seizure-free. If you remember, please say a prayer for me to stay seizure-free tomorrow too.
I receive speech therapy, physical therapy, occupational therapy, and last but not least, developmental therapy. Everyone I work with, including my teachers at daycare are so wonderful to help me reach the greatest of my potentials. I have come a long way in the last year and will share some of those things with you in the next page. Everyone is so proud of me. Mom and dad say all the time that unconditional love has no barriers.