For the last five years, my life and my daughter's life has been consumed by an exhausting and traumatic battle with medical professionals and social care. I have had to fight every step of the way just to be listened to, just to be believed, and most importantly, to get my daughter the help she desperately needs.

My daughter is non-verbal. She cannot tell us where the pain is, but she shows us every day that she feels unwell. Over the last five years, her condition has worsened, her abilities have declined, her happiness has faded, and her body is often covered in bruises from the pain she cannot express. Recently, out of sheer desperation, I paid privately to see a neurologist specialising in neuro-genetics in London. Money I do not have. I only wish I had been able to do it sooner. But I had felt that 'I was not allowed'. Controlled by a hospital that insisted there was nothing wrong, that her distress, her pain, was 'just her'.

At the same time my own health has detriorated significantly, I am now facing the possibility of heart transplant. Trying to fight for my daughter while facing my own-life threatening condition has pushed me beyond what I ever thought possible.

Why we need help:

We are now facing unavoidable costs for:

Travel to London for specialist appointments

Accommodation during hospital stays

Extended stays near Newcastle for my own transplant journey

We have a family dog, Buddy, we are trying to keep him in our family during this very difficult time - but that means at times he's having to go to doggy day care, go to kennels or have a dog walker. This is proving costly. Not helped by the failure of social care and the ICB to provide the skilled carers my daughter needs.

We are exhausted, traumatised but I am not giving up. I will keep fighting for my daughter. I will keep fighting for answers. I will keep fighting for both of our lives.

If you are able to donate, no matter how small, it will help us during an incredibly difficult time in our lives. If you cannot donate, please share our story. Every bit of support means more than I can ever express.

Thank you so much.

Rachel and Francesca x