The family of severely disabled has written to the Prime Minister David Cameron after his benefits were slashed because he turned 18.
Liam Barker was born with a muscle wasting disease, which means he is unable to do anything but blink and smile.
He was not expected to live more than a few months but has defied doctors' predictions by reaching his 18th birthday.
But now he is an adult, his benefits have changed dramatically, even though his condition has not changed and he still requires 24 hour care.
The changes mean his parents receive 29 per cent less than before - £74 less a week. The electricity bill for his life support machine is £120 a month and the family say they are struggling to survive.
The Department for Work and Pensions is assessing Liam's needs to see if he is entitled to further benefits. The family face a wait of up to 13 weeks for a decision.