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

08-11-2010

Lior had a fabulous weekend - he is looking and feeling so much better and also got to meet his great grandmother yesterday. She is now 86 years old and was so excited to hold him and talk to him. Lior doesnt get to see her cause she stays in Neslpruit and was here visiting her daughter for a little while. I am really glad she got to meet him. I think now daddy and I have to recuperate this week - although Lior had a good weekend he did not let us get muchy sleep - just wanted to talk and after talking all night and being over tired was a bit niggly and the heat just did not help either. I was quite suprised yesterday when he went to sleep at 18:30 and was still sleeping this morning when I left for work. Little angel obviously just had to catch up on some sleep !! I wish I was in bed with him !!
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