This month we are celebrating Rare Disease Day.
We are on various research programs and having a rare condition means you are never really sure what will happen, or what the prognosis will be.
Before having my baby, I had NO idea that there were conditions that were either; so rare you never really get a primary diagnosis, or that it can be months maybe even years before getting a diagnosis.
I just assumed you could take a blood test and that was it, the doctors could diagnose you.
I never realised that I would be putting my baby under general anaesthetic just to have tests done.
When you try to explain it their expression turns into a blank expression as if your words are going right over their head.
That while you are on the path to a diagnosis of this rare condition a lot of support groups, charities and health services aren’t really sure what to do with you, your baby is disabled but there isn’t a diagnosis so we don’t tick a box.
When we get a diagnosis, it may either be the fact that my baby is the only one in the world with the condition or that she is one baby in a handful with the same condition.
In which case which foundation do you turn to?
You hear about these rare conditions on the TV but you never in a million years think that the rare condition would be in your house.
These programs I used to cry over as a child was going through the unknown, and here I am doing exactly that.
It gives you strength to research and go further emotionally then you ever thought you would be able to.
My baby was one in a million any way but now I know she is more than just one in a million.
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