A woman whose daughter is waiting for the HSE to approve a cystic fibrosis wonder drug is living in a caravan during hospital visits to save money.

Gypsy Robinson, 14, is one of about 500 people awaiting the conclusion of cost negotiations with the manufacturer of CF drug Orkambi.

Three months after the drug’s initial rejection by the National Centre for Pharmacoeconomics, her mother wants to know how much longer they will have to wait.

In June the NCP said the estimated cost of almost €400m over five years – an estimated €158,000 per patient annually – could not be sustained.

This prompted lobby groups and patients to campaign for the drug ‘at any price’.

This week Cystic Fibrosis Ireland urged the Department of Health to prioritise the issue as negotiations continue.

Such approval would be lifechanging for Gypsy whose illness means she spends 50% of her time in hospital – a burden she hopes the drug would dramatically reduce.

Hazel Robinson has watched her daughter’s condition deteriorate in recent years.

Earlier this year she was forced to make almost daily trips from their home in Newtownforbes, Co Longford, to Crumlin Children’s Hospital.

With these journeys costing more than €30 per day, Ms Robinson – who also has two young boys – was struggling to make ends meet.

The Ronald McDonald house in the hospital grounds provides accommodation but, with just 10 rooms, Ms Robinson could not be guaranteed space.

She told the Mail On Sunday: ‘After Gypsy’s last admission she had only five days back at home. Then she was back up to Crumlin for this admission.

‘She was fairly okay at first but then she was fighting for every breath and had to go back. It was so frightening.’

The distraught mother added: ‘It feels we are in hospital more than at home. She’s so much worse. She spends three weeks roughly out of every six weeks in Crumlin.’

Gypsy requires 14 different types of medication daily, as well as needing a pump and nebuliser to help her breathe.

Ms Robinson said: ‘It’s terrifying watching her be sick. And then as a mother there are so many other things you have to think about.

‘Financially I would not be able to do this without help from my family. They support me so much but there is only so much you can do.’

As Gypsy’s full-time carer, Ms Robinson qualifies for the carer’s support grant.

This year she spent €1,000 of the grant on a caravan, thinking it would be the best way to guarantee a family holiday and still be able to return home quickly should Gypsy fall ill.

She said: ‘It was only after we bought it that someone suggested we bring it to Dublin. ‘I didn’t think it would work – I didn’t want to be on the side of the road.

But we found this camp, it’s in a park, it’s green and clean.

The campsite Camac Camping in Clondalkin offered the family a reduced rate, meaning the price of night’s pitch is less than the travel cost.

‘I know the caravan is a shortterm solution,’ she said. ‘The only solution really is to have the Orkambi. We know that drug works. I’ve talked to people who used this drug and it worked for them.’

Yesterday, Hazel addressed a public meeting in Mullingar, talking about the financial impact of the disease on her family.

‘I feel we’ve been forgotten – it’s so hard to think that the Government is happy to put a price-tag on my child’s life.’

By Niamh Griffin