A MUM said she was ‘over the moon’ after being told a drug that could prolong her daughter’s life was set to be made available on the NHS.

Enola Halleron, who turns 12 tomorrow, suffers from the rare Morquio A syndrome, a severely debilitating condition that kills most sufferers by the time they are 25.

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The expensive drug Vimizim, which Enola has relied upon to treat her illness on a trial basis, has so far been unavailable on the NHS.

But now the organisation has negotiated a substantial discount with manufacturers BioMarin Pharma for the next five years following a campaign to help Enola and a handful of other sufferers.

Enola’s mum Donna Halleron said the availability of the drug had brought so much relief to her and her daughter after months of uncertainty.

She said: “I’m over the moon because for the last 12 months we have been living on an emotional rollercoaster.

“It’s been nearly a year since the NHS were supposed to make a funding decision and when it’s somebody’s life in the balance it throws up all kinds of emotions.

“It has been rough for Enola and all of the little ones but she has been great. She knows exactly what this condition means for her future but she just takes it in her stride.

“The availability of the drug is certainly a step in the right direction.”

The official decision over the drug’s availability and the criteria needed to access it will be rubber stamped on December 16.

Earlier this year, the Lancashire Telegraph got behind Enola, who attends St Bedes High School, in a campaign to try and make the vital medication, also known as elosulfase alfa, available on the NHS.

Donna said that the campaign was invaluable and made a huge difference.

She said: “The campaign from the Telegraph was excellent because it really built that awareness up right across Blackburn, which was great.”

Previously, the National Institute of Health and Care Excellence concluded that the long-term benefits of Vimizim were uncertain, and it would cost around £400,000 per patient each year.

On average, around three children are born with the inherited disorder each year in England, which is caused by the lack of a key enzyme in the body.

This means that Enola will never grow more than one metre tall and will also live with heart disease, pain, fatigue and hearing and vision loss.

While it is not a cure, Vimizim will slow down the progression of these symptoms by replacing the vital enzyme and allow Enola and other patients to get a longer and better life.

Dame Barbara Hakin, NHS England’s national director of commissioning operations, said the availability of the drug was great news.

She said: “This agreement will enable us to start treating people with this debilitating condition, assess whether this treatment provides real benefits in the long term and, assuming it does, then continue to provide it in a sustainable way.

“It is good news for all our patients that we have been able to come to a more reasonable arrangement that works for the NHS more broadly.”

Meindert Boysen, technology appraisals programme at NICE, said: “We are pleased that the company and NHS England have agreed a scheme that will allow patients with this condition to access elosulfase alfa while at the same time generating valuable evidence on its use through research and collection of ‘real-world’ data directly relevant to patients in the UK.” Donna said the family would also like to thank the charity Dream Flight foir a recent trip which Enola had enjoyed.

She said: “The charity which takes seriously ill children on holiday, have changed her life. She went to Florida recently to Disneyland and swam with dolphins, which was a dream and something I couldn’t give her.”