Memorial website in the memory of your loved one
Her legacy
Kayda's Legacy: The Book: Caring For Your Child With Hydranencephaly  
After Kayda died I thought there was no reason for me to go on. Then I remembered the book I'd wanted to do with information about caring for a child with Hydranencephaly. There was my reason to keep going. I worked on it non stop for the first 4 months after her death. It ended up being 560 pages long. We decided to just have it printed privately as a lot of the information was being used on the condition it not be used for profit. We sold all 175 copies that were printed. By 2002 It was clear that the book needed to be revised. It was decided by the group that it should be done on cd in pdf format so that there wouldn't be the huge printing costs of the first book. That gave us a lot more room so the new book has a ton of pictures of the children and is much more complete than the first (or it will be). There have been many setbacks and at this time (Feb. 2005) it's still a couple of months from completion. But, when it's done, it will be very informative with a ton of information to help families as they care for their children. It will also contain over 60 stories of children with Hydranencephaly. This book would never have been done without Kayda. Sure, eventually someone else would have done a book but it just wouldn't have been the same. Her personality and that of all our other kids shine through in the book.
Kayda's Legacy: The Hydranencephaly Mailing list & International Hydranencephaly Support Group  
When the website first went online I'd only known of a few families of children with this condition. From talking to people we came to believe that there weren't more than 30 children living with this condition all around the world.

However after the website had been online for a few months more and more people started contacting me. I still thought there weren't enough people for it to be worth starting a mailing list. But, in mid Sept. the 8 families we were in touch with started communicating back and forth. We heard about onelist (now yahoo groups) and decided to start a mailing list. We figured 20 members would likely be as high as we'd go. Well, we were wrong!!!!

6 1/2 years later there are over 150 members on the email mailing list and we've been in contact with at least 150 more families.


Eventually the list would have been started by someone else, but Kayda was who got it going when it did. Because of her many families now know that they're not alone. They have an outlet for their fears, their questions and their dreams.
Kayda's Legacy: The Rays of Sunshine Website  
This is the first website ever to offer hope, support and information on the condition called Hydranencephaly. It's at: http://www.hydranencephaly.com It went online in April 1998. At the time I'd only known of about 12 families of children with this condition and had only had direct contact with 4 or 5 families. The original site was very small and very amateur. 7 years later the site is huge and hundreds of people access the site every day. There are currently stories of over 60 children on the site. This site would never have been started without Kayda to inspire me.
Kayda's Legacy: A Poem  
Kayda's Legacy A child was born A small child A beautiful child A different child A child without hope? NO!!!!! A child who smiled A child who loved A child who listened A child who shone A child whose legacy brings hope to many. By Barb Aleman
Kayda's Legacy: The Hydranencephaly Support Group  
Kayda's Legacy includes the International Hydranencephaly Support group It's the first support group for families of children with Hydranencephaly
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