Liz and Dan's story

Our daughter Ava is six and has cerebral palsy, epilepsy and hydrocephalus, and is blind.

Ava loves music therapy and it really helps her, but there is no provision where we live so we had to pay £40 per week to go private. When we buy specialist toys, we have to go to companies that charge four times as much.

Every time she needs a new wheelchair, we have to pay for the extras - a rain cover and sunshade can cost £500! We spend £50 a month on nappies, and Ava has food allergies so we spend a fortune on "free-from", roughly £25 to £35 extra each week on food.

I have had to give up work to care for Ava, so Dan has to work seven days a week. He doesn't get quality time with her any more. The only time he has off work is when we take her to therapy. We always feel we are penalised because he works, because it means we don't get financial help.