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About Us

This website is the most comprehensive source of  information and support on the Internet available for those who care for someone with  Hydranencephaly

I am the parent of a lovely girl (Kayda, 12/2/88-6/23/00) who was born with Hydranencephaly. When I first had Internet access I was excited and expected to find out a lot about Hydranencephaly. I found very little and what I did find was very technical and pessimistic. More than anything, what I wanted to read about was what children with this condition were or might be like. I didn't find anything positive. However over the years I have been in contact with many  families who have children with this condition. I've found that for each of these families their children are the "rays of sunshine" in the midst of the dismal prognosis of "professionals" So I decided to make a site that was about our "Rays of Sunshine". My hope is that people who are just starting to learn about this condition will find this site, and in it find a balance between the medical and scientific "facts" and expectations, and the lives of the children and families living these facts on a daily basis.

When this site went online in April of 1998, I had been in contact with only 5 or 6 families.  I thought that as this was such a rare condition I'd be lucky to have 10 visits each month to the web site.  Over the years our site has had more and more visitors.   In September 1998, a mailing list was started by families who were hungry for contact. The original group now has over 300 members. There are now several other groups related to Hydranencephaly. 

As our group grows and we get to know more about each of our children we've been able to identify many common characteristics and share ideas and suggestions.  We've also said good bye to too many of our children who have gone Home to God.  In short we've become a family of people who care for these very precious "gifts from God".

This site has become the legacy of Kayda and all of the children, both those still with us here and those that have gone Home to dance with the angels. In the view of many in the world, our children are sadly lacking in many ways. In our eyes they're perfect. 

 

 

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August 16, 2001- January 12, 2005

This website is funded in loving memory of Jason S. by his mother Kammy

The information on this site is provided by families, caregivers, and professionals who are or have been caring for a child with Hydranencephaly.

Please report any broken links or missing photos to angelbearmom@shaw.ca