Letters to Lior: August 2015

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, August 26, 2015

Another goodbye

Hello my precious sweetpea

Its been a while since mommy has been here - its just been too hard for me but today I needed to come here. Yet again tragedy has struck our family and our hearts are broken. On Thursday your uncle Kevin went to heaven - as was with you it was totally unexpected - we are all so devastated.

Although we know you were there to welcome Kev with open arms and that the two of you will look after each other and no doubt get up to mischief - we are not quite sure how to cope, especially daddy. Within a space of a little more than a year he has lost two people that have meant more than the world to him. Kev is daddy's brother, best friend and the only person that he really opened up to when it came to talking about his feelings and emotions. Today Daddy, Ouma, and your aunt and uncles had to say their final goodbyes. They had a small ceremony and celebrated his life with wreaths of flowers in the ocean. I am sure you are both looking down on them and saying well done because that is exactly what Kev would have wanted. As with you, uncle Kevin was cremated and everyone has decided that when they get home, his ashes need to be placed next to yours.

This is so hard, we aren't even anywhere near coming close to terms with having lost you, and now this. We need help big boy, we need help to get through this - I just don't see how we are going to manage - especially daddy.

We love and miss you so so much

All my love
Mommy