Where do I start?

[NoodlesMam]

My 2yo DD has eye/visual problems that will progressively worsen and has to have medication every couple of hours. Her condition has not been properly diagnosed and her consultants have said that its possible we may never get to the bottom of it. Problem is I'm worried about her starting nursery next September without the help and support she will need. My HV mentioned that we would need an SEN but would have to fight for it and that it takes about a year to put in place, so... Start now I thought? But the Opthalmologist said it's best to get a firm diagnosis before referring for assessment? What if we never get a firm diagnosis? All I know is my beautiful, intelligent little girl can't see properly, will eventually go blind and is in pain! The symptoms she has are incredibly rare and we have been told that these have never been seen in a child of her age or indeed at all??? Where do I start???

Repost this over on SN, as it gets more traffic.

She needs a statement, and she will clearly get one. I can't see you having to fight for one.

You don't need a dx to get a statement, or you need to prove is that the school won't be able to cope with her needs without additional help.

I'd ring Parent Partnership, who will be able to give you the details of the visual impairment team in your LEA who should be able to give you loads and loads of help and support. (Hopefully)

Thank you IndigoBell