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 1, 2017

Another step forward and giving

My precious precious angel boy

Another Christmas and new year with out you here by our side - never gets any easier. In fact this one was just a little harder but at the same time a very "heart warming" one too.

Daddy and I plucked up the courage to go and visit a home for abandoned children - well abandoned babies really - and once we were there we knew straight away that The Door of Hope was where your things needed to be. We walked in and saw straight away that the children are well cared for and the material things are looked after especially with so many babies. We left and my heart felt ..... well I guess I can say my heart felt sure that this was the right place.

That evening daddy and I had a difficult task ahead of us. We unpacked all of your "Crates" and had to go through each and every little thing and decide what is was that we want to keep and what we would like to bless other children with - I still wanted to keep everything !! -  it was incredibly heart wrenching, but we made it, we sorted through everything and kept what our hearts could not part with and set the other stuff aside.

On Sunday morning we delivered everything to the home - your cot, pram, jumpers, walking rings clothes and lots of toys. Daddy and I know that these babies will be so blessed to be able to use these - it warms our hearts so much to know that we could bless others the way that we were and are blessed to have you and the way that others were always helping and blessing us - its our turn now - as heart sore as it is.

I still have your chest drawers next our bed, with all your clothes and blankets that we used on a daily basis - I wasn't able to go through those, that will take a little more time, but I have plans for those and once I am there, I will tell you all about it.

Love you and Miss you terribly my little monkey, binky bums.

Lots of love

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