Terminally ill boy 'may die before vital car funding'

Media playback is unsupported on your device
Media captionParents of a terminally ill boy say their son may die before the get funding for a specially adapted car.

A terminally ill boy may die before he qualifies for funding to help improve his quality of life, his parents have said.

Stanley Murphy, who is nearly two, has Tay-Sachs disease which means he is unable to move and has seizures.

His parents said they need a specially adapted car to take him out but warned he may not live until the funding threshold of three years old.

The Department of Work and Pensions said it cannot make exceptions.

His parents, from Newton Abbot in Devon, had applied for funding to buy a car capable of carrying a wheelchair under the Disability Living Allowance mobility scheme.

But their bid was rejected because of Stanley being too young to qualify.

Image caption Stanley Murphy's mother Emma said every day counted and they tried to make the best of every one and getting out was key

Emma Murphy said: "I don't think the people who make these decisions have a clue what life is really like when you have a poorly child.

"Stanley might not live until he is three so to be told that he can't get this help that he needs until he is three is not right.

"There are lots of children who unfortunately have very short lives, then you don't have time on your side.

"You want to make the best out of every day and to get out and about is a massive part of that.

"We want to give him the quality of life he deserves while he is with us."

A spokeswoman for the Department of Work and Pensions said they were "unable to consider entitlement" as the age limit is the law and not a regulation.

She said applications can be made three months before the child's third birthday so that if approved the benefit can be paid on the day of the birthday.

Tay-Sachs disease

  • Affects about one in every 360,000 children born worldwide
  • There is currently no cure for Tay-Sachs disease
  • The only treatment is to try to treat the associated symptoms
  • It is caused by a gene mutation
  • It stops the body from producing an enzyme
  • Without the enzyme a fatty substance can build up in the cells of the brain and nerves
  • The build up stops the cells working normally and eventually destroys them

Source: NHS

More on this story

Related Internet links

The BBC is not responsible for the content of external Internet sites