A MUM whose husband and young son are fighting the same rare life-threatening disease is campaigning to gain access to vital medication on the NHS.

Sally Balfour-Allen was devastated when her little boy Samuel was diagnosed with tuberous sclerosis complex (TSC) and then husband Martin was found to have the same condition.

A licensed drug called everolimus has been effective in treating 95 per cent of people who have used it, but NHS bureaucracy is preventing patients getting their hands on the drug.

Mrs Balfour-Allen, of North Leigh, said: “It’s a life-threatening condition and can lead to the growth of tumours throughout the body.

“My son has tumours on his brain which have given him epilepsy. He is eight years old but developmentally he is like an 18-month-old.

“Some of the tumours get larger so the ones of particular danger are in the brain or in the kidneys.”

She said risky surgery to remove the tumours used to be the only option but now everolimus has proved to be an effective way of stopping tumours growing or slowing down the rate of growth.

Mrs Balfour-Allen said a business case was put forward for prescribing the drug two years ago but claimed NHS England had dragged its feet and failed to put the proper procedures in place to allow the drug to be prescribed.

She said: “Patients in critical need are being barred from having this drug.”

Son Samuel was diagnosed with tuberous sclerosis complex at the age of 17 months.

Mrs Balfour-Allen, 44, said: “I had been taking him to the doctors for quite some time because I thought there was something not quite right when he was four or five months old.

“He would look very frightened and startled and then go to sleep.”

Samuel was diagnosed with epilepsy at 15 months but then a tumour was spotted on his brain and the true cause was discovered.

Mr Balfour-Allen, 39, was diagnosed with the genetic condition afterwards and has had to have one of his kidneys removed as a result of the disease.

The couple’s nine-year-old daughter Gabriella was tested for the condition but was given the all-clear.

Mrs Balfour-Allen said everolimus costs £36,000 per patient per year but the cost of keeping a patient who has suffered kidney failure as a result of the disease on dialysis would be £35,000.

A national campaign to make the drug available recently received high-profile support from Poirot actor David Suchet, whose grandson suffers from the disease.

Parents and supporters have written to the NHS and MPs but have got nowhere.

Mrs Balfour-Allen said: “At the moment, Samuel doesn’t need the drugs and neither does my husband, but Samuel has got a large tumour on his brain and if it grows he is going to require treatment further down the line.

“It’s heartbreaking because there are people out there and children out there who desperately need this drug and just can’t get it.”

A statement from NHS England said: “No new treatments are made routinely available on the NHS without having been approved by NICE (National Institute for Health and Care Excellence) or forming part of a NHS England clinical commissioning policy.

“NHS England is considering the formation of clinical policy on everolimus as part of our work programme for the coming year, along with a large number of other competing priorities .”