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.

Wednesday, February 29, 2012

Hip hip hooray

Hip hip hooray .................. Hello my 22 month old miracle !!!!!!

Today you are 22 months old, lively, happy, chirpy and definately compatible with life and full of life. I know some people think it really stupid that every month I wish you a happy birthday, but as other Trisomy families will understand, we celebrate your birthdays in days, weeks, months and then years - because your little life is so precious and so limited and because every single second, minute and day with you is just a complete miracle and so very special.

So happy happy happy happy happy happy (cant say that enough) birthday big boy - just like your sister Tia said last night - YOU ARE THE CENTRE OF OUR LIVES.

Love you baby angel.

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1 comment:

  1. Taryn van RensburgMarch 1, 2012 at 4:25 PM

    So get the number counting thing. SO get it. Happy 22 months, big guy! You keep showing the world what a little champion fighter you are xx

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