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Cystic fibrosis-sufferer, 13, feared to have DAYS left to live as drug giant fails to act

Stricken 13-year-old Ayden Cochrane (Image: Daily Express)

Only seven months ago the young cystic fibrosis-sufferer had guests in hysterics speaking at his parents’ summer 2019 wedding. Now his family fear he has just days to live and needs full life-support without drugs firm Vertex’s miraculous CF “cure” Trikafta.

Trikafta is not yet licensed in Europe but since July, Vertex has given it free to 120 UK sick sufferers under their “compassionate-use” scheme.

Ayden’s consultants have warned the US firm only Trikafta can halt his deadly decline to get the liver and bowel transplant he needs.

But despite the Daily Express previously begging the drug giant to act, Ayden is still waiting and his tearful mother told us she fears her precious boy is dying.

Earlier this week battling Ayden told his doting mum Tracey: “I’m scared I’m dying.”

Our harrowing pictures, released with his family’s consent, show the youngster is now so swollen with fluids in a Paediatric Intensive Care Unit (PICU) in Glasgow, that he is sleeping all day with his ears blocked up and unable to hear.

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MORE ON OUR CAMPAIGN: Cystic fibrosis sufferer thanks Express after getting pills

Ayden could have just days to live (Image: Cochrane Family)

Mother-of-five Tracey, 33, of Johnstone, Renfrewshire, told us last night: “Please don’t let my son die.

“I cannot understand how Vertex can see Ayden like this and not give him their medicine.

“Watching your child go through this – while watching other CF sufferers on Trikafta around the world have amazing results – is heartbreaking.

“But Ayden is so strong he is determined to try to get better, and I won’t give up fighting until he does.

“He won’t have long to live, just a few days, if he doesn’t get help very soon. His situation is that serious.

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“He will be 14 soon but the other night he told me he was really scared. It’s so upsetting.”

Mrs Cochrane, who is at her son’s bedside, added: “It is agony for any parent to see your child in this state. Just months ago he was up entertaining the crowd at our wedding.

“In 2018 he was running around a pitch playing football and being active. Now he needs a machine to aid his breathing. He is just sleeping all the time now.

The youngster is now so swollen with fluids in a Paediatric Intensive Care Unit (Image: Cochrane Family)

“Ayden has no time – he must get Trikafta now.”

Mrs Cochrane, husband Paul, 33, and their other four children Cody, 15, Dylan, 10, Lucie, four, and Rueben, two, are hoping for a miracle.

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But it is a miracle that could be achieved if Trikafta drugs were made available.

Last Christmas the Express helped dying Nicole Adams, 28, of Belfast, get Trikafta in intensive care – weeks later she is out of hospital, smiling and back home.

Nicole has been speaking to Tracey to lend her support and advice and has written a moving plea to Vertex herself.

Earlier this week speaking from his PICU bed, Ayden himself pleaded: “Please give me Trikafta and let me have the chance to live.

“Right now, it feels like I am suffocating in my own body and I’m trying really hard.

“I would give anything to be able to kick a football around again and see my wee brother and sister start school.

Since the age of three he has needed a feeding tube into his stomach (Image: Cochrane Family)

“I would love to have more energy to make more memories with my family.”

Scotland’s Health Secretary Jeane Freeman said last night: “Seeing a child in pain is heart-breaking for any family.

“Senior officials have contacted Vertex to strongly urge them to consider Ayden’s case for compassionate Trikafta as quickly as possible.

“I have ensured that Ayden’s family are kept up-to-date on the actions we are taking and hope it will be successfully resolved as a matter of urgency.”

Vertex stressed their medical team are in “close contact” with Ayden’s consultants at Glasgow’s Royal Hospital For Children.

They added: “Making decisions about requests for compassionate use of an unlicensed medicine is always complex.

“We endeavour to make these decisions as ethically and fairly as possible.”

Ayden was born with a blocked bowel, a common indicator of CF, and has suffered many serious chest infections affecting his lungs.

By four-days-old, he had already had three bowel operations. He was aged 18 months when he was able to leave hospital.

By the age of one-and-a-half he had a third of his bowel being removed.

Since the age of three he has needed a feeding tube into his stomach, to force calories into him at night-time and keep his weight up.

‘Ayden wasn’t always like this. He used to love playing football and PE’ (Image: Cochrane family)

His liver then started to deteriorate and he has now developed advanced liver disease and bowel issues, so needs a transplant.

Ayden also suffers from CF-related diabetes and hepatopulmonary syndrome (HPS) – a rare lung complication of cirrhosis of the liver.

With HPS, when the liver is not functioning properly, blood vessels in the lungs dilate meaning the lungs lose their effectiveness in getting oxygen to the body.

On December 28 he was admitted into PICU to aid his breathing and at night a machine actually breathes for him as he sleeps – supporting his damaged lungs.

He needs 68 litres of oxygen a minute, almost the highest amount any UK NHS hospital can give a patient.

If the Glasgow Rangers fan removes his breathing tube just for one minute his CO2 figures “go through the roof”, Tracey explains.

She added: “Ayden wasn’t always like this. He used to love playing football and PE. Only last autumn he was in school. Now he is here.

“Vertex has the power to help him and do something incredible and genuinely ‘compassionate’ in the true meaning of the word.”

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Trikafta is ‘almost a cure’

THE Daily Express’ Twitter appeal to help desperate Ayden Cochrane was beamed out billboards across central London last night.

Kind-hearted firm London Lites, an urban digital advertising business boasting 30 screens across the capital, put up our tweet.​

Passers-by on the busy A4 road in South Kensington, west London, stopped to read our message with the dramatic picture of the struggling 13-year-old.

One concerned reader Roy Shepherd posted: “Sometimes a tweet needs a little help from a friendly billboard courtesy of our friends at London Lites. It is now live now in central London.

Our cystic fibrosis campaign has been beamed out on billboards (Image: TWITTER)

Our message read: “Look at poor Ayden Cochrane. He has cysticfibrosis but needs VertexPharma’s new drug #Trikafta to live. If they could please explain why he so far fails to qualify for it under their ‘compassionate’ scheme for the sick, @Daily_Express would be fascinated to hear it.

UsVERTEX’S new cystic fibrosis drug Trikafta is alleged to be so miraculous that the firm’s CEO proudly dubbed it “almost a cure” for the genetic condition.

In October, as the NHS finally reached an agreement for the Boston-based biopharmaceutical company’s currently available pills Orkambi and Symkevi, patients in the United States were starting to be prescribed Trikafta.

It was then that Vertex chief executive Dr Jeff Leiden announced: “We have conquered a disease. You don’t get to do that very often in this business.”

But until Trikafta has been granted a European Union licence, the £237,000-a-year tablets cannot be prescribed by doctors in Britain nor even purchased on this side of the Atlantic.

The only way UK sufferers can get the wonder drug is if Vertex allocates it for free under its compassionate-use scheme, which is designed for very sick patients.

​Orkambi and Symkevi are effective for 50 per cent of CF sufferers if they have two particular genes – though the drugs can only “stop the clock”.

Kind-hearted firm London Lites shared out tweet on their advertising boards (Image: TWITTER)

Yet Trikafta is effective for 90 per cent of patients and can reverse the cause of the cruel condition.

Stricken Ayden Cochrane, 13, has already tried Symkevi but he reacted badly to the pills.

Now only the more powerful Trikafta can help save his life.

Yet critics fear that Vertex is trying to focus the compassionate-use scheme for Trikafta towards only those patients who genetically cannot take anything else.

It is claimed the company prefer gravely-ill CF sufferers to continue taking Orkambi or Symkevi.​

The Daily Express exclusively revealed last week that there are 120 people in the UK who have so far been granted Vertex’s compassionate-use Trikafta.

But with 10,500 CF patients in Britain – there are more than 70,000 around the world – Ayden is one of many who is desperately ill but unable to gain access to the vital treatment.

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Ayden’s mother’s plea – ‘Don’t let my boy die’

Schoolboy Ayden’s “proud” mother Tracey Cochrane penned a powerful plea to Vertex to save her “wonderful boy”.

Writing an open letter in the Daily Express, she begs the US firm to “be heroes” and give him their new wonder drug Trikafta.

Mother-of-five Tracey, 33, of Johnstone, Renfrewshire, said: “Please don’t let my son die, he has so much more to give.

“Vertex, you are the only people right now that can give him a chance, to be his heroes and the power to grant him life.

“Watching your child go through this – while watching other CF sufferers on Trikafta around the world have amazing results – is heartbreaking.

“But Ayden is so strong he is determined to try to get better, and I won’t give up fighting until he does.

“He won’t have long to live, just a few days if he doesn’t get help very soon. His situation is that serious.

“Fluid is starting to collect in his lungs because we can’t seem to shift the infection.

“My heart is shattered watching him panic each time he’s touched because he can’t hear us talking to him as the fluid is even in his ears.

“I’m sorry if these pictures are upsetting for people to see but I am so bloody proud to be this boy’s mum.

“I have no idea what I did in life to deserve him – he’s such an inspiring, brave and wonderful boy. I’m the proudest mum in the world.

“I just wish I had his strength and determination as when he told me he was scared of dying, my heart broke.

“It is just not fair on him, that he must beg for the chance to live.”

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Like me, Ayden must be given a second chance in life by Vertex

The shocking image of little Ayden lying in bed is one we should not have to see, Nicole Adams writes.

There is a drug out there that could potentially have a huge benefit but sadly not enough sick people are getting it.

I had to fight for the right to live – but why should any of us struggling to breathe with CF when there is a wonder drug out there?

My heart sank as I sat in my own home surrounded by my family but feeling helpless that this little boy is suffering and wants nothing more than to be at home with his loved ones.

Ayden’s mum Tracey and I have been in contact and all I can do is comfort her with hope that this drug can work if he gets it.

Vertex need to stop thinking about ‘criteria’ and ‘patient numbers’ and think more about giving very sick people this second chance in life.

I’ve been given it, though I was at deaths door before I got it – why should it be like this? It’s simply not fair or just.

This drug has helped me a lot over the last month and I wish that little Ayden will get the chance I did.

• Nicole Adams, 28, had 10 per cent lung function in intensive care before the Daily Express successfully helped her access compassionate Trikafta.

Now just three weeks later she is well enough to return home in Belfast, Northern Ireland, feels great and does not even need any extra oxygen.

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