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Joey's Journey

Our Life With Lissencephaly

Welcome!

Last Updated on April 30, 2009


Joey - 21 years old 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 400 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.

To sign up to the "Loop", enter your e-mail address in the space below, then click on the "Join Yahoo!Groups" icon.

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UPDATED MARCH 21, 2006 - Looking for information on assistance programs in the United States and Canada? Check out the "Medicaid, MR/DD Waiver & Other Assistance Programs" page. It has links for each State Medicaid office and information on waivers and other assistance programs.

In this lissencephaly world, often you will have times when you are feeling blue. Check out God's Embroidery, Shake It Off And Step Up, and The Cracked Pot, our series of uplifting articles we will post to inspire you and hopefully lighten the load a little.


When your child is as heavy as Joey is, you may consider getting a lifting device. Rigging up the sling can be a little confusing. Check out our 4 page illustrated "Hammock Sling Instructions", which can be accessed from our "Adapted Equipment" page. You can print out a copy for future reference.

We hope you will enjoy your visit here!


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Completed Pages:
(This website is still under construction.)
HOME What Is
Lissencephaly &
Joey's Diagnosis
Joey's
Story
Our
Photo
Album
Joey's
Wish
Trip
Adapted
Equipment
Medicaid & Waiver
Programs
Angel
Tribute
Page
Suggested
Reading
Related
Links

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We received a wonderful surprise gift today for Joey's 19th birthday! Our website is the recipient of the "Spirit Of An Angel Award", which honors websites of special needs children. Thank you so much!


And on July 15, 2000, we were presented with the "Facing Challenge Award". We are very honored, and invite you all to check out other award winners by clicking on the icon above.

To reach us by e-mail:



DISCLAIMER:

All information published in this website is from our personal experience only. We are not doctors - please do not interpret the information as medical advice. It is of extreme importance to establish a team of medical experts to guide you through this lissencephaly experience. Your child's and your family's health and happiness depend on it!

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