Louise Wilks says she has been trying to establish a registered charity for 11-year-olds Shaney and Chesney, to allow her to raise money for the costly things social services do not cover.

But Ms Wilks, who lives in Harefield, says her first application was sent back by the charity regulator because she had filled out the incorrect form. She then made a second application to the Charity Commission, which was returned with no explanation, she said.

“All this time we spent doing all the forms then they asked us to do it again,” said Ms Wilks. “We don’t know what was wrong.”

The boys have Noonan Syndrome, a genetic disorder which causes blindness and heart and lung problems. They need special equipment to allow them to eat and breathe, along with 24-hour care.

Now, their mother needs to adapt her vehicle with a ramp to allow the boys’ wheelchairs to be pushed on, as they are getting too heavy for her to lift. This would cost more than £6,000.

“These rejections have dragged us back to further than we were in the beginning,” said the divorced mother-of-three.

Last year, Louise and her daughter, Chantelle, took part in the Nuts Challenge, in the hope of raising sponsorship for the twins. But, without a charity number, there were unable to set up a website and raised only £40.

They have signed up for the challenge – an assault course race in Surrey – this year, and were hoping to have a charity number before the event in August.

In a statement, the Charity Commission said: “Before we can register an organisation as a charity, we have to be sure it is a charity in law, that is an organisation with exclusively charitable purposes for the public benefit. If the organisation was set up to help only an applicants’ children then it’s unlikely it would meet the public benefit requirement.”

Ms Wilks needs a carer to look after the boys for four nights a week. If you are interested, call the Gazette newsdesk on 01895 451 051.