A very confused place to be

Last week one of BBGs workers said we should apply to a charity that maybe able to help us. She had never heard of them turn anyone down and thought BBG would be a perfect case. We needed a few things for her sensory equipment but also potentially going privately for a couple of pieces of equipment for her as the NHS list is huge (not complaining at all they have helped so much in BBGs care).

We approached the charity and explained BBG and her symptoms, I explained that the doctors can’t say she has a life limiting condition however unofficially have told us to brace for it.

They replied with one sentence which stated to look on their Website and they couldn’t help as they only deal with life limiting conditions.

Having an Undiagnosed child is such a hard thing to take. Your not sure what’s wrong with your child, you don’t know what’s going to happen in the future, you have this thread of hope that your child will magically be better with a simple pill, you have people constantly asking about your child and angry and confused about why no diagnosis has been made and you realise organisations don’t like the word Undiagnosed.

We’re in limbo…. BBG has a disability but no one knows what it is and so it could be “cured” or the prognosis maybe a lot better then we could possible hope for. The disability organisations turn you away as we haven’t got their diagnoses and there’s only a couple of charities that help Undiagnosed even through support.

Yet we aren’t in the able bodied community as BBG does have a disability.

It’s a very confusing and upsetting place to be in. I feel that I have rambled on and yet that’s how I feel, very confused… just rambling and plodding through life doing my best for my kids.

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