On Williams ninth day I talked quite alot with doctors and nurses the way I always do with people that fascinates me, and especially now when I nervously awaited something important – that chromo report – Normally these people gladly answer, but on this particular day everything was different. They knew something that we weren’t supposed to know just yet. So before the good doctor entered the room I was already prepared for something bad.
Later that same afternoon he came, along with some supportive staff (they often do when something difficult is about to be said – this was the first introduction to that type of meeting) and he sat in front of us – this part is quite dim to be honest but part of the talk is clear as a day.
Chromosome report showing a very rare disorder, a first for this hospital. He went into detail about numbers of chromosomes and how it worked and what was wrong in Williams case. The disorder didn’t have a name except the technical one but the national board of health and welfare had a webpage dedicated for the disorder for us to read. He had a printout with him that we couldn’t keep. I had time to read a few lines about life expectancy and it said around pre school age. Before he left he said we shouldn’t use Google but only trust the info on the page he suggested.
We were stunned. Linn especially, she comes from a very different culture were you are being taught that the norm is the right – everything else is wrong and only a burden to the society. How would she tell her parents? Her friends? What would become of her boy? How soon would he die? Will he suffer? She slowly withdrew into a dark hole. She cried tons and wouldn’t speak anything useful for days.
Found a new family!
The first thing I did was googleing. Soon I discovered rarechromo.org which is exactly what it sounds like.. Rare chromosome organisation also known under the name unique. This was our island in an ocean of dark matter.. (Try a Google for Trisomy and you know what I mean) We soon realized that those other one hundred with the same disorder had collected themselves into a closed Facebook group and that’s were I’ve been digging whenever I’ve had any questions. So instead of being unique as so many of you, William is one out of at least one hundred! That’s something! :D
That’s also where we discovered that Trisomy 9 mosaic adults existed and that gave us hope, hope of a future for our own Bruce Lee.
Now this post will get too large if I cover more ground so I’ll stop here the next episode will include some episodes from the first year. Always feel free to ask anything regarding William and or photography. ;)