This picture here is about six thousand people in NY. When I saw this picture, it really showed me how rare Ryan's diagnosis of Trisomy 18 is. It makes me feel so singled out, although I know it is God's will for our family to be going through this, I can't help but feel I have some major bad luck or something. I picture me.. in bright red or orange... raised above this huge crowd of people and being chosen to have a son born with this genetic chromosomal disorder, because the ratio for the chance of having a baby with Trisomy 18 for young healthy parents like us is 1, out of 6 thousand live births. Pretty hard to grasp and very overwhelming when you can actually see a picture of what 6 thousand people looks like, and one little me out of them.
I remember when we first found out Ryan had Choroid Plexus Cysts in his brain fluid and then clinched hands, they gave us these ratio's as some kind of hope and assurance that Ryan would most likely be fine, because, hey it's 1 out of 6 thousand! I don't have hope in ratio's anymore. When the genetic counselor spoke with us, she said Trisomy 18 is very common in the gene world, second to Down Syndrome, because according to the number of chromosomes and cells we have in our bodies, 1 out of 6 thousand is actually a lot.
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2 comments :
I live in Missouri and a friend of mine from High School had a son apprx. 20 years ago that was born with Trisomy 18. At the time it was a total shock to the family as it was so rare. He lived a short time. They also had another son who was around two at the time of Timothy's birth. I am happy to say that they had two more children after losing Timothy, a boy and then a girl. They were both born in good health. They were also a young couple dealing with a child's death. My heart goes out to you and your husband for the pain you are going thru.
Thinking of you in my prayers,
Connie
Wow. Ashley I am so sorry that you guys have had to deal with such a great loss. I love you and keep your family in my constant prayers and thoughts! I wish there was more I could do.
- Tam
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