A WILTON mum unable to sit up in bed, eat, or speak to her nine-year-old son had hope snatched away from her when the NHS said it would no longer pay for a "miracle" treatment that almost reversed her condition.

Six years ago Dawn Conrad was a senior director for the NHS, an outdoor enthusiast and planning a family with her husband Simon and son Daniel.

But Dawn became severely unwell overnight, and spent five months in hospital while doctors tried to work out the cause.

She then spent two years at home, on a hospital bed in her dining room, unable to go outdoors.

Despite taking more than 50 tablets and three injections each day, Dawn cannot sit up for more than few minutes without passing out, her vision and breathing are affected and light, noise and even a breeze coming in the window can cause her burning pain.

Simon, a lieutenant colonel in the army, spent five years balancing a demanding career with caring for Dawn and their son, but the pressure led him to have a nervous breakdown 18 months ago.

The couple thought they had turned a corner when a neurologist at Southampton diagnosed Dawn with a rare autoimmune disease (Autoimmune Autonomic Ganglionopathy) and arranged a three-month trial of treatment known as intravenous immunoglobin (IVig).

Wiltshire Clinical Commissioning Group (CCG) agreed to fund the £15,000 cost and in a statement to the Journal, as she still cannot speak, Dawn said the effects were “nothing short of miraculous”.

“For the first time in six years I didn’t feel gravely ill all of the time and all of my symptoms drastically reduced,” she wrote.

“I was able to sit up without passing out, I was almost pain free and I was eventually able to walk 15 metres with just one elbow crutch.”

But a blow came in June, when Dawn was scheduled to have her next dose of IVig and was told funding could not be obtained.

After submitting a further request, the plea for funding was rejected, and the NHS said there was no evidence of “clinical exceptionality”, or proof that the treatment would work, despite Dawn’s progress.

Since treatment was withdrawn, Dawn’s condition has deteriorated and she is now back to the state she was in before starting the IVig trial.

“I was, and still am, distraught,” Dawn said. “How can they take my life away from me? How can you put a price on a life?

“The neurologist has said there is no other suitable treatment for me, and NHS England will not fund the one treatment that could give me life.”

And Simon said it was “a huge kick in the teeth” to watch the positive effects of Dawn’s treatment slowly slip away. The pair also worry about the effect on Daniel, who is acting as a young carer for his mum at the age of nine.

Daniel told the Journal he liked helping his mum feel better, but said he missed her being “energetic” and taking him out on the bus, as she had done before she became unwell.

He was just two when Dawn was first taken into hospital. Dawn has never been able to take him to school or take part in his primary school life, which ends next year.

Daniel added: “I feel quite sad that she’s poorly now, because she can’t do what she used to, and I really miss her.”

The family are appealing to the NHS to meet the costs of ongoing IVig, and say it is “entirely nonsensical” for them not to pay.

Taking into account Dawn’s prescriptions, personal health budget, personal independence payments and inpatient costs, the NHS currently spends about £70,000 each year to keep Dawn alive, estimated to cost £1.9million over the course of her lifetime if her condition does not worsen.

But a lifetime of IVig would cost £256,000 - a saving of £1.6million to the NHS.

It would also enable her to become a wife and mother to her family again.

Dawn said it feels as though the NHS is paying more to “keep her ill” than to treat her.

“I’m just existing every day, feeling gravely ill,” she said.

“I can’t do anything, I can barely eat and I can’t talk.

“I cannot live like this.”