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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

Flood causes problems at Plymouth eye hospital

An eye examination at the Royal Eye Infirmary at Derriford Hospital Credit: ITV News West Country

A flood is causing problems at the Royal Eye Infirmary (REI) in Plymouth.

The flood, on Level 3 of Derriford Hospital, is described as minor but has affected some clinic rooms.

Patients who would be affected are being notified by telephone. Anyone who has an appointment at the REI and has not been contacted should attend as planned.

People concerned about an individual appointment this week should call 01752 439956.

Urgent care is continuing as normal.

Anyone needing emergency eye care should call the Telephone Triage Number 01752 439330.


1 in 3 South West teenagers too stressed to sleep

Research from The Children's Society says many 16 and 17-year-olds often feel sad and don't feel optimistic about the future. Credit: Chris Radburn/PA Wire

A new report claims one in three older teenagers in the South West have been too stressed to sleep.

The research from The Children's Society says many 16 and 17-year-olds often feel sad and don't feel optimistic about the future.

The charity is calling for urgent action to protect the most vulnerable teenagers.

"At the moment just too many 16 and 17-year-olds are falling between the cracks of childhood and adulthood - and that needs to change urgently."

– Amy Gibbs, The Children's Society

Campaign to save Devon's community hospitals

Axminster Hospital is one of the community hospitals under threat. Credit: ITV News

Protestors opposed to plans to close community hospitals and move beds in Devon will hold a demonstration in Exeter this morning.

Councillors are considering referring the consultation process conducted by the Clinical Commissioning Group to the Department of Health. The CCG says the changes are needed because of changing demand and financial challenges.

Funeral of former "Child of Courage"

We filmed Kayleigh when she was a little girl who had an awful lot to deal with Credit: ITV News

The funeral is being held today for a woman from Paignton who was born with all her organs the wrong way round. She also had a heart transplant.

Kayleigh Moore touched everyone's hearts when she was named a Child of Courage in 1993. The next year, after two bouts of encephalitis she met Princess Diana.

She got on with life, she grabbed every opportunity that she had and that's what I did I just grabbed onto the opportunity of being a mum for as long as I possibly could with her and always will be, always be her mum.

– Eileen Lang, Kayleigh's mother

500 march against ward closures in Dorset

More than 500 people have been demonstrating against proposals to close the children's ward at Dorset County Hospital.

The local health authority is considering moving some of the paediatric services from Dorchester to hospitals in Bournemouth and Poole. The idea is part of a wide range of changes to children's services in East Dorset which are currently out to consultation.


Dorchester schoolboy to feature in charity's Big First Aid Lesson

Sean Irwin, his mum and grandmother Credit: St John Ambulance

An eight-year-old St John Ambulance volunteer from Dorchester is taking a lead role in the charity’s Big First Aid Lesson later.

The story of how Sean Irwin looked after his mum, Caroline (29) when she fell six feet and knocked herself out cold is being featured in the live webcast.

Sean, who has been a St John Ambulance Badger in Dorchester for three years, feared his mum may have suffered a serious head, neck or spinal injury in the fall, so he checked her breathing and pulse, rather than putting her into the recovery position.

Caroline regained consciousness and was taken to hospital by her mum.

Almost 200,000 children in over 1,000 schools will watch the lesson during the webcast. For more information:

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:

Derriford launches new £2m helipad

When it is not in use, the H will be covered with the no fly signal. Credit: Plymouth Hospitals NHS Trust

Trauma victims in the region will be able to get treatment faster as a new helipad is launched at Derriford Hospital today.

The £2 million facility means journeys will be cut by 30 minutes. It will also allow the air ambulance and Search and Rescue Helicopters to land at night.

The letter 'H' has now been painted on the roof, making it clearly visible from the air. When it is not in use, the H will be covered with the no fly signal - a yellow cross with a red square.

Derriford Hospital is the designated major trauma centre for the peninsula and receives around 400 patients a year that need to be transferred by air. The location of the new helipad allows access straight to the doors of our Emergency Department, enabling faster transfer of patients and quicker access to emergency care for major trauma patients.

The helipad has been funded by the County Air Ambulance HELP Appeal, which has contributed £850,000. The Hospital Trust has contributed a further £900,000.

  1. West Country (E)

What to look out for if you suspect your baby has meningitis

The NHS advises that every suspected case of meningitis should be treated as a medical emergency.

Babies and young children under five are most at risk of developing bacterial meningitis. Its symptoms usually begin suddenly and get worse rapidly.

A baby or young child with meningitis may:

  • have a high fever, with cold hands and feet
  • vomit and refuse to feed
  • feel agitated and not want to be picked up
  • become drowsy, floppy and unresponsive
  • grunt or breathe rapidly
  • have an unusual high-pitched or moaning cry
  • have pale, blotchy skin, and a red rash that doesn't fade when a glass is rolled over it
  • have a tense, bulging soft spot on their head (fontanelle)
  • have a stiff neck and dislike bright lights
  • have convulsions or seizures

More information can be found here.

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