ALL Jemma Peacock wants to do is see her adored children grow up and get married.

Like every proud mother, she dotes on her two daughters and wants to spend as much time with them as she possibly can.

As the 31-year-old and her husband Tony, 34, play with Kacie, six, and Willow, four, they look like any happy family.

However, there is a dark cloud hanging over them as Mrs Peacock is terminally ill with an exceptionally rare form of cancer.

The cancer, known as gastrointestinal stromal tumour (Gist), is so unusual her consultant said she would have more chance of winning the lottery than developing it.

But instead of focusing on keeping well and undergoing her treatment, Mrs Peacock is taking on the Government by calling for a cancer drug that could prolong her life to be made more easily available.

Almost 6,000 people have already signed her online petition, which is aiming to get the medication she needs reinstated on to the national Cancer Drugs Fund (CDF) list.

The £200 million fund allows patients with rare cancers to access specialist drugs which would not normally be routinely available from the NHS.

She has also been backed by bestselling author Irvine Welsh, former England footballer Carlton Palmer, cricket commentator David ‘Bumble’ Lloyd and singer Eddi Reader, who have urged their Twitter followers to sign the petition.

Mrs Peacock was expecting her second child when she was diagnosed with Gist, which is found in the digestive system.

She needed ten blood transfusions and nearly died.

There is no cure for the condition but there are drugs available that can help her live for considerably longer.

But the most effective, regorafenib, is due to be taken off the fund at the end of March, meaning Mrs Peacock and other patients around the country will have no immediate and easy access to it.

Mrs Peacock, from Cootham, near Storrington, said: “I want to be able to see my girls grow up and get married.

“I want to be there for them for as long as I possibly can.

“I am on a different drug at the moment but as my condition worsens I am going to reach a stage where I will need regorafenib.

“I’m only young and I should have the opportunity of using the drug if I need it.”

Mrs Peacock desperately wants her petition to reach 100,000 signatures, which would make the matter eligible for debate in the House of Commons.

She said: “Getting 100,000 signatures on the online petition means, quite literally, everything to me at the moment. “I am asking everyone to take 30 seconds to visit my website to sign it. “This will help me and many others in a similar position to me live longer. It really is as simple as that. “It’s hard to deal with having someone at the NHS put a value on your life but to me the chance to see my little girls grow up is priceless.”

Mrs Peacock’s daughters do not know how ill she is and she and her husband, a builder, are trying to keep things as normal as possible for them.

She said: “They are too young at the moment and there is no need to burden them with it.

“I am spending lots of time with the kids but my other focus is on this campaign.

“I shouldn’t have to be doing this. We are an ordinary family and just want to get on with things. I shouldn’t be having to be at the centre of all of this. But I have to try.

“I have to do everything possible to try to spend more time with my family.

“This drug has already proved to be the most effective and if it can prolong my life, then it might be for long enough for a cure to be found.

“This is not just about me. This is about everyone else who may be in my position. There is a chance I might be able to get hold of it through a special application for funding but that is not guaranteed and I should not be having to jump through hoops.

“Even if I did end up getting the treatment for myself, that isn’t helping other people.”

Professor Ian Judson, chairman of the Gist Support UK medical advisory board, said: “The fund was initially set up to give access to drugs deemed not to be cost-effective by the National Institute for Health and Clinical Excellence, which has not appraised regorafenib for cost-effectiveness in this setting.

“The CDF says it will not remove drugs from the list that are the only drug available for a given disease.

“However, regorafenib is the only treatment for forms of Gist that are resistant to other drugs.”

When assessing the drug, the CDF said although the patient numbers treated with regorafenib for Gists were small, less than 100 a year, it could also be potentially used for the more common bowel cancer, so could not be included on the list.

Visit to sign Mrs Peacock’s petition.

Who decides which drugs are available?

NHS England is responsible for deciding which drugs are added or removed from the fund’s list.

It said any patient receiving a drug through the fund would continue to receive it, regardless of whether it remained there. Medics can also apply for their patient to receive a drug not available through the fund on an exceptional basis.

Drugs which are the only therapy for the cancer in question will remain available through the Cancer Drugs Fund list (CDF).

If the CDF panel removes a drug for a particular indication, some patients may be able to receive it in another line of therapy or receive an alternative CDF-approved drug.

The CDF panel’s findings when reviewing regorafenib showed it cost £4,493 for a four-week cycle and most patients had treatment for an average of almost 23 weeks.

The panel found the average drug cost of regorafenib combined with its clinical effectiveness, resulted in an overall assessment score which represented “insufficient value for retention within the CDF”.

£1.3bn a year on provision

The NHS spends about £1.3 billion annually on the provision of cancer drugs within routine commissioning.

The fund was established as an additional funding source to this and aimed at particularly rare cancers.

It has provided an additional £200 million each year since then to enable patients to access drugs that would not otherwise have been routinely available from the NHS.

This is increasing to £280 million in 2014/5 and an estimated £340 million from April 2015.

High Court battle for access to treatment

Mrs Peacock is not the first Sussex patient to take on the authorities to get the cancer treatment they need.

Colin Ross hit national headlines when he successfully fought a High Court battle to get the drug that he needed to prolong his life.

Then 54, he took legal action against NHS West Sussex to force managers to pay for the Revlimid drug recommended by his doctors.

The drug was not available on the NHS at the time.

His victory helped pave the way for other patients in a similar position to get the drug as well.

Mr Ross, from Horsham, who had only been given months to live at the time, went on to survive another two-and-a-half years before passing away in January 2011.

In an interview with The Argus in 2009, Mr Ross said he was proud of what he had achieved and one of his greatest pleasures was knowing others had benefited from his High Court win.

He said: “I have certainly lasted a lot longer than people expected.

“My doctors at the Royal Marsden said the drug had a good chance of extending my life and it has done that for me so far.

“The Revlimid has had positive results. I would certainly call it a wonder drug.

“It has given me longer with my family and my friends. You can’t ask for more than that.

“I just did the High Court action because I wanted to get the treatment I needed.

“But I have now learned that it has set a precedent and many people in the region found it easier to get the treatment afterwards.

“I don’t go looking for thanks or praise but it was a really nice feeling. I felt chuffed about it.

“The idea that other people in my position have been able to spend a bit more time on this planet is a good one. If I have helped with that, then it makes me feel very good.”