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, November 23, 2011

What most people take for granted, I cherish with all my heart

Hello mommy's precious little boy. Last night you fell asleep on my lap - like you normally do, but this time you grabbed my fingers and held on tight. It brought tears to my eyes, not because I didnt want you to, but because just that little moment which most people would take for granted, as a normal every day action, but for me, it is a moment I will cherish forever and all eternity which will remain imprinted within me, because I know that tomorrow or the day after, maybe in a week or two or in a year or a few, I may never be able to hold your hand or feel your soft baby skin against mine or marvel at every little thing that you do. Thank you precious baby boy, for reminding me again - (not that I have ever forgotten) - just how precious and special every moment is with you.

Loving you more and more each day.

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1 comment:

  1. AnonymousJanuary 3, 2012 at 5:59 PM

    A very touching picture.I have a very similar picture of my daughter too. She was resting her head on my husbands palm. Agree with you that this could be an everyday thing, but for us with a Trisomy 18 child this moment is very much treasured.

    My daughter lived 36 months & a week. I cherish each day I had with my daughter.

    God bless...

    Yvonne

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