Letters to Lior

Trsiomy 18


There are 23 pairs of human chromosomes. In Trisomy 18 (Edwards syndrome), there is an extra chromosome with the 18th pair. Like Trisomy 21 (Down syndrome), Trisomy 18 affects all systems of the body and causes distinct facial features. Trisomy 18 occurs in 1 in 3,000 live births.It is three times more common in girls than boys. Unfortunately, most babies with Trisomy 18 die before birth, so the actual incidence of the disorder may be higher.Infants who survive, experience serious defects and commonly live for short periods of time. Trisomy 18 affects individuals of all ethnic backgrounds. Trisomy 18 severely affects all organ systems of the body.The majority of children who are born with Edward's syndrome do not live past their first year of life. Their average lifespan for half of the children born with this syndrome is less than two months; approximately ninety to ninety-five percent of these children die prior to their first birthday. The five to ten-percent of children who do survive their first year experience severe developmental disabilities. Children who live past their first year require walking support and their ability to learn is limited. Their verbal communication abilities are limited as well, although they are able to respond to comforting and have the ability to learn to smile, recognize and interact with caregivers and others. They can acquire skills such as self-feeding and rolling over.

Thursday, April 7, 2011

31-01-2011

Wow my little snookums 9 months old - a true little miracle.

We had a good but sort of strange weekend, mommy was on facebook T18 mommies site and I came across a video clip of a little boy called caleb, who also has Trisomy 18, also a gorgeous little boy. I managed to get daddy to have a look and he was so intrigued which got him wanting to see more. Now remember this has been very difficult for daddy, mommy's way of coping was and still is to do as much research as possible, but daddy not so much. Anyway we came across another video clip of a little boy called Lane whose mommy has asked to be friends on facebook, anyway he is now two years old and doing really well, but at the end of the clip there was a statement to the effect " we want to change the doctors perception of "Trisomy 18 - incompatible with life" - well my little angel I have never seen daddy so disturbed in all my life - which then turned to anger and then determination. How can someone tell us or decide for parents like us that our children are not worth living. We were so lucky with your doctors that they respected out decision to bring you into this world and support us as best as possible. Overseas this is not the case, children like you are considered not worthy of life - a complete disgrace and it is you my little angel and many more children like you, that prove them wrong. I am so proud of you !!
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