December 2, 1988-
June 23, 2000
British Columbia, Canada
Rays of Sunshine Hydranencephaly Website
Book on Hydranencephaly
Kayda was born with a rare neurological condition called hydranencephaly. In hydranencephaly, brain tissue of the developing baby dies and is replaced with fluid. Children with this condition are thought to die shortly after birth, or if they live, be in a "permanent vegetative state". Well, as I always said, no one told Kayda that. When she came to live with me at the age of 4 1/2 she was a sad lump of a child who never moved, struggled to breathe, and rarely smiled. Within a few months though, she was a different child. She learned to play with toys, she learned to roll and she laughed. She'd also taught herself how to swallow and suck and was able to start eating orally after years of tube feeding.
When Kayda was 7 years old, I got Internet access. I immediately did a search on hydranencephaly. All I found were some really depressing autopsy reports and discussions on whether children with hydranencepahly should be used as organ donors. That had nothing to do with my beautiful Kayda. So, I started looking for other families who had a child with this condition. By early 1998 I had found 3 other families and had discovered a couple of lists of families from Internet based matching lists.
In April of 1998 the Rays of Sunshines website went online with Kayda's story and practical information on how to care for a child with hydranencephaly. In September of the same year a mailing list was started with only 8 parents. At this time there are now over 100 families on the mailing list. Over the years pictures of Kayda happy and smiling and attending school with typical children brought hope to many new families.
When Kayda died in June 2000 at the age of 11 1/2, I felt there was nothing left to do. My purpose in life was gone. But, I was so wrong. Out of that grieving came the first, and to my knowledge only, book about children with Hydranencephaly. That is Kayda's legacy. At first it was just going to be a simple expanded version of what was on the website written for those with no Internet access. Well, it ended up being 560 pages long and contained a lot of information about Kayda and myself. It contains the stories of over 40 children and lots of practical information to help families on their journey to care for their children. It is currently being rewritten. The website itself has grown into a huge site with not just information about hydranencephaly but also an active grief and loss section with greeting cards designed for those who are grieving.
Eventually, another family would have come along and created the website and mailing list but at this time it is Kayda who was the catalyst. Because of her, when a family has their child diagnosed with Hydranencephaly, they have somewhere to go that will give them hope and practical information rather than just sitting and waiting for their child to die as is recommended by most Drs.
A child was born,
A small child
A beautiful child
A different child
A child without hope?
A child who smiled,
A child who loved,
A child who listened
A child who shone
A child whose legacy brings hope to many.
Kayda's story is at: http://hydranencephaly.com/kayda.htmThrough all of these avenues I am sure that the life of one small child with a rare condition will never be forgotten.