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.

Friday, May 19, 2017

Last Kiss

My Angel boy

My heart aches terribly today, I miss you so so much. Today its three years since I last gave you a kiss. My heart shattered into zillions of pieces, saying goodbye to you and kissing your cold lips as my tears streamed down on to your face,  has destroyed me in a way nothing else could.

I just wanted to take you out your precious little coffin and hold you once more, but I couldn't. Instead Daddy and I placed your favourite toys and our letters beside you and hoped that this would be enough and a few hours later I watched all the balloons - one for every day of your life - float away and drift high into the sky - our final goodbye.

What I would give just to hold you one more time.

Love you big boy

Lots of Love

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