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In loving memory of our precious son, Joey
March 24, 1981 - September 2, 2006
Some people only
dream of angels;
we were blessed to hold one in our arms for 25 years.
This site is hosted by Joey's parents on his behalf, to share with other families of children with lissencephaly
his story.
If you have just recently been told your child has lissencephaly, we remember only too well the devastation
you are feeling now. All your hopes and dreams are shattered, and the future holds nothing but uncertainty. We are here to
tell you that yes - life will never be the same again. However, with a little different perspective, life does go on and happiness
does return.
This precious gift of your child, with all of his or her medical challenges, will bring immense joy to
your family. You will live through many, many difficult days. But, getting through those days, you will also recognize and
value the good days your child has. We would like to share with you some of our difficult days, and how we got through them.
Share other practical tips that you might find helpful in caring for your child.
What you won't find here is detailed
medical or genetic information on lissencephaly. The Lissencephaly Launch Pad , is an informative page of links for anything and everything relating to lissencephaly.
We also suggest you
consider joining the Lissencephaly E-Mail List . The "Loop" is is an e-mail based support group with over 500 families of children with lissencephaly from all over
the world. A wonderful support set up, it is a place where you can ask questions on any topic relating to lissencephaly. The
daily contact with other families makes you feel a little less alone in dealing with the challenges that come with lissencephaly.
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