My baby (well toddler, but she will always be my baby), has a rare condition, it is so rare all the tests are coming back inconclusive.
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.
I never realised how isolating it is to have something rare, that you could say to people what it is or the symptoms and people look at you in confusion.
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?
I never thought I would have a child with a disability let alone one with a rare condition.
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.
Having a rare condition is isolating, and yet gives you the strength to campaign and teach people about living with one.
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.