“We had to give up work and be 24 hour carers”

This month we’re asking parents about the cost of living crisis, and how the extra costs of caring for a disabled or seriously ill child are impacting their family.

Shea is four and has cerebral palsy and epilepsy. He has lost most of the right side of his brain due to a brain abscess that he got while fighting meningitis. His mum Laura shares their story below.

 “When Shea came along and our lives changed dramatically. My husband and I both had to give up work and be 24 hour carers for him.”

“The extra costs of having a child with additional needs is massive for us as a family. Before he was born, we got a loan for a driveway to be put in. Shea is four now and we have still had to pay the loan back while living with benefits.

“Shea goes through so many clothes due to constant diarrhoea which adds up. And as soon as you type in ‘special needs’ into the computer for anything you need, the price goes up, not by a few pounds but sometimes hundred.

“We got Shea a sensory bubble lamp with soft play which we will be paying off for the next 6 months. If we had got it new it would have been £2000. We got it for a lot less but it’s still so expensive.

“Then there are the constant appointments and stays in hospital. When you have to stay in, that’s two lots of food to pay for us to eat at hospital, and then food for the family at home.

“Carers allowance is £76 a week. But I’m doing far more hours caring for Shea than I did when I was working. The government need to look at what extra costs disabled people, and parents have, and make a lot of changes.

“Family Fund is great – they help a little. But so much more needs to be done.”