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, October 19, 2017

Our final goodbye

My beautiful baby boy

So much that we have been through in the last few years, some not so great, but some wonderful too.
I haven't been here in a while, grampa was really very ill and had to have two brain surgeries so that's pretty much where our focus has been for the last few months, but fortunately he has made it through and well on his way to recovery (a long road ahead but recovering).

Daddy and I went away for a few days (first time ever that we have been alone) and we decided that it would be the right time to release your ashes. We did this on 3 October in Amanzimtoti. My heart broke when I opened the little box just to find a small zippy bag with white powder. Im not sure what I was expecting  - obviously a lot more :(

Anyway daddy and I climbed the rocks and got in as far as we could and released your ashes into the sea. It has taken us a little longer than three years to set you free, but it is done now.

So for now, we will cherish all the memories, joy and unconditional love you brought into our lives ....... until we meet again.

Love you my with all my heart angel boy
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1 comment:

  1. DiOctober 31, 2017 at 11:28 AM

    Thank you for sharing little Lior's life, and your journey. It has been a special read.

    ReplyDelete

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