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Desperate families must keep waiting for drug that could save their children

Leo Le Gal's family say Translarna has slowed down the devastating symptoms of his illness. Credit: ITV News

Families desperate for the NHS to approve a drug that could change their children's lives have just found out they have to keep waiting.

The decision on whether to fund Translarna, which could be life-changing for children with muscular dystrophy, was expected to be this afternoon.

The mother of a boy from Devon who has the devastating muscle-wasting condition Duchenne Muscular Dystrophy has been fighting for the NHS to approve the drug, which is widely available in Europe.

Ruth Le Gal's son Leo is being treated with Translarna in America, and his family say they have seen huge improvements in the last few months - but they are desperate for the drug to be approved here as he is only being treated as part of a trial.

A decision won't now be made until NICE concludes its appraisal process.

"Children deteriorate very quickly who have got this illness and this medication can stop this illness, can keep them stable and keep them healthy."

– Ruth Le Gal, Leo's mother

Devon Mother calls for life changing drug to be made available on the NHS

Ruth and her son Leo - who suffers from muscular dystophy Credit: ITV News

A mother from Devon is calling for a potentially life changing muscular dystrophy drug to be made available on the NHS.

Ruth Le Gal's son Leo suffers from the conditon and today she joined a group of campaigners at Westminster who say the drug is taking too long to be approved.

Today at PMQ's David Cameron said a decision would be made in the near:


Devon woman finds 107 gnomes in front garden

107 gnomes were discovered in the garden in Ivybridge Credit: Marcela Telehanicova

A woman from Devon woke up to find more than 100 gnomes carefully arranged in her front garden.

Marcela Telehanicova pulled open her curtains to be confronted by 107 gnomes in a formation on her front path at her home in Ivybridge, Devon in the early hours of June 2.

"Ok, who has put 100 gnomes outside my front door?!?!" the 30-year-old posted on her Facebook page after the discovery.

Police are now investigating the incident amid concerns the gnomes were stolen.

Two weeks since Devon teenager went missing

Ryan Ranson. Credit: Devon & Cornwall Police

A teenager from Plymouth who was last seen buying a train ticket from Paddington to Bath has now been missing for two weeks.

17-year-old Ryan Ranson from Devon was seen on CCTV at the station on Friday 23 January. He went missing after failing to show up to work. His parents say he is not in trouble and they just want him home.

Father makes heartfelt plea for son to come home

Ryan Ranson went missing after being dropped off for work at Devonport Dockyard on Tuesday 20 January Credit: Devon & Cornwall Police

17-year-old Ryan Ranson from Ivybridge in Devon has now been missing for a week. His father, Paul, says no matter what he may think, Ryan has done nothing wrong and he and his mother just want him home.


PICTURES: CCTV of missing teenager Ryan Ransom in Paddington Station

Ryan Ranson (bottom right) Credit: Devon and Cornwall Police

Police have released CCTV footage of missing teenager Ryan Ranson from last week.

The teenager can be seen in Paddington Station where he was last spotted withdrawing cash just before 10.15am on Friday 23rd January.

The 17-year-old from Ivybridge was last seen by his family on Tuesday after he was dropped off for work at Devonport Dockyard in Plymouth.

The 17-year-old from Ivybridge was last seen by his family on Tuesday Credit: Devon and Cornwall Police

Could missing Ryan be in Bath?

Ryan Ranson bought a ticket to Bath Spa at Paddington station on Friday Credit: Devon and Cornwall Police

Police say a teenager who has been missing for almost a week could be in the Bath area.

Ryan Ranson from Ivybridge was reported missing after failing to turn up for work at Devonport Dockyard on Tuesday 20 January.

The 17-year-old was last seen on CCTV using his bank card at a cash point machine at Paddington train station in London, on Friday 23 January, shortly before 10.15am.

He bought a ticket to Bath Spa station.

Officers are making enquiries in Bath and London, as well as in Torbay and Blackpool after Ryan’s bank card was used there last week before he travelled to Paddington.

It’s been nearly a week now since Ryan went missing and his family are extremely concerned about him.

This is the first time he has gone missing and his disappearance is completely out of character.

There have been no sightings of Ryan since last Friday in London. We don’t know whether he is now in Bath, has returned to Devon or has gone somewhere else.

We are continuing to make enquiries to find him and would like to speak to anyone who sees Ryan or knows where he is.

– PC Rebecca Lockley, Devon & Cornwall Police

Police say missing teenager could be near Torquay

Ryan Ranson has been missing since last Tuesday Credit: Devon and Cornwall Police

Police are continuing to search for a teenager from Ivybridge who has been missing since last Tuesday.

Ryan Ranson was last seen after he was dropped off at work at Devonport Dockyard. His family say his disappearance is completely out of character.

Officers believe the 17-year-old may be in the Torquay area after his bank card was used at a cash point machine on The Strand on Wednesday afternoon.

Police are urging people to come forward who have any information about Ryan's whereabouts.

He may have used public transport to get to Torquay from Plymouth, and we are appealing to anyone who has seen him or knows where he is now to get in touch.

– Jonathan Ross, Devon & Cornwall Police

PM receives petition calling for ground breaking drug to be more widely available

The Prime Minister accepts the petition calling for Translana to be made more widely available. Credit: ITV News West Country

The Prime Minister has personally intervened in a campaign by a family from Devon to make a ground breaking drug more widely available.

The parents of Leo Le Gal, from Ivybridge, say it has slowed the onset of his muscle-wasting condition, Duchenne Muscular Dystrophy. But Leo is only getting the drug, Translana, as part of an American trial - it's still not approved here.

Today other parents gathered outside Downing Street calling for Translana to be made available here - and responding to a letter from another nine year old boy, the Prime Minister said he'd look into it.

On his return to Downing Street, Mr Cameron did just that, chatting to the boy and his family, and in a highly unusual move, accepting the petition and posing for pictures himself.

Tonight NHS England said that the drug might be fast tracked - for patients whose doctors say they have an urgent need.

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