She developed normally and everyone said how pretty and how smart Caroline was.
She walked,talked,sang songs, and knew our friends and family names. She did everything that a "normal" child her age could do, her only hesitation was riding a tricycle and she was a little shy with other children.
On September 10, 2001 (the day before the WTC disaster) Caroline had her first seizure. The doctor thought it was an isolated event. Then in October the "big" seizure happened. Caroline has had seizures since that time.
Caroline had many tests to find or rule out many "diseases". She was diagnosed with Neuronal Ceroid Lipofuscinosis also known as Batten Disease. Batten disease is a fatal disorder of the nervous system.
If anyone has more information that can help Caroline please email us. Or if anyone knows a parent of a child with this horrible disease please forward our email address, we would be glad to share what information we have.
updated 06/04/2008
