Jan 2004
Caroline was born May 1, 1998. Everything was normal, all the fingers and
toes were there.
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 we can help a parent of a child with this horrible disease please forward
our email address, we would be glad to share what information we have.
On March 8, 2009 Caroline became an Angel.
updated 03/09/2009
toes were there.
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 we can help a parent of a child with this horrible disease please forward
our email address, we would be glad to share what information we have.
On March 8, 2009 Caroline became an Angel.
updated 03/09/2009
Links
May 2005
Feb 2006
2002
2003
Nov 2007
May 2008
Special Christmas Socks