As I will write quite a bit about my son it might be good for you to know some more about him.
He’s born in February 2013 diagnosed with a rare chromosome disorder called trisomy 9 mosaic – there are about one hundred others similar to him out there in the world. Now I’ll try to keep this basic for simplicity.. So. Chromosomes are the master plan with all the info needed to form us psychically and mentally correct and – We have 22 of them formed as pair with one from your father and another from your mother. (sometimes this could also differ and that’s called disomy) plus a X and Y pair (if you’re a boy that is). They sorted by size, so the biggest pair is called nr 1 and the smallest 22.
Williams chromosome number nine isn’t a pair, they’re three. Trisomy. So something at some point in a very early stage of him being formed went wrong..
the tiny third..
William also has something called a mosaic disorder – that means that not all cells in his body has the defect. You can measure this in different places of the body and get different counts but most common is that you take a sample of blood and count that. I think they counted around 40-50 cells and saw that around 30% of those had the trisomy defect and therefore 70% of his blood cells has normal chromosomes.
If he had 100% he wouldn’t be with us today.
Some of you might have heard of trisomy before and the most common version is called trisomy 21 (full or mosaic) and the more common name for that is Down Syndrome.
And here’s a shot of William from his first week alive on my arm.
the 7th of February in 2013 William, or at the time, Bruce Lee, was born five weeks early at 1550g
Now I’m writing this with William sleeping beside me and I think he’s about to wake up. So, lets call this chapter one. Chapter #2 is out!