Hi Thumper,
We were shocked when we were told initially that we could apply for DLA when Niamh was diagnosed, after all, she's ours and of course we are going to look after her and care for her whatever, it's just very unlucky that she has been given this hand of cards. We were given middle rate.
We were under the impression that we would be entitled until Niamh is 16, so were shocked when we got the refusal letter. I keep asking my husband if we were complacement completing the form as we do handle her diabetes quite well and appear to be handling everything well. She is nearly 14 and I would honestly say, we are in very muddy waters with her bloods everywhere. Last night we where up from 1.10am through to 3am. Then because I've been stimulated having to think how to bring her high bloods down, changing her line and insulin and bolusing, I/Niamh can't just fall asleep again. My husband said that the forms were worded completely different and we answered everything they asked, so didn't omit anything, otherwise it would have been trying to justify why she's entitled and not answering their question (waffling).
I feel quite sad, that we have to fight for this. Even though we have now nearly got 3 years experience of the condition, we are still learning all the time and being in the very place we are at ie. practically a 14 year old teenage girl, with hormones surging left right and centre, the condition does what it likes and you can only just keep running with it and correcting as you go. No two days are ever the same. I am sounding like I'm justifying us now and I'm sure I don't need to on this forum as I'm sure you are all aware of how it is.
Going to try to be positive an appeal this weekend and cross our fingers and see what happens :thumbup: