Boy, 13, with life-threatening disease has second chance due to US ‘wonder drug’

Boy, 13, with life-threatening disease has second chance due to US ‘wonder drug’

A 13-year-old boy facing almost certain death has been offered a second chance at life after being granted a new 'wonder drug'.

Ayden Cochrane's mum Tracey wrote to the US drug firm Vortex begging them help her son, who has cystic fibrosis, by providing him with the life-saving drug Trikafta.

The medication is not yet available on the NHS because it does not have an EU licence, however the manufacturer can hand it over on compassionate grounds.

Ayden, from Johnstone, Renfrewshire, Scotland, is in such a critical state that he had to discuss his end-of-life care with doctors two weeks ago, the Daily Record reports.

Tracey previously penned a plea to Vertex, asking them to save her “wonderful boy” and grant the family permission to use Trikafta.


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Today the Cochrane's shared the amazing news that Vertex would offer Ayden the drug on compassionate terms.

Trikafta, dubbed by Vertex as an “almost a cure”, can’t be prescribed by UK doctors as it hasn’t been granted an EU licence.

The only way sufferers can get it is if Vertex give it under a compassionate-use scheme.

The family posted on their official Facebook page, Ayden's Journey: "Last night was a hard night, at 11pm we were asked to consider withdrawing Aydens support as it didn't look like he was going to make it through the night.


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"I think for a long time we have tried to prepared for this but you can never be prepared.

"After a difficult few hours we had a phone call from Ayden's consultant to say Vertex had phoned her and they have said yes!

"Vertex have agreed to give Ayden Trikafta on compassionate use."

The statement continued: "We have so many thank yous to give and we want to say there are no words to say how truly grateful we are for all your support and help to get Ayden's fight out there.


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"He's very sick and has declined a lot over the past week so his journey ahead is going to be difficult and dangerous.

"But right now we have nothing to lose and while he continues to fight we will fight with him.

"He is a warrior, he is our son, his life matters

"This fight is not over."

In addition to an infection which has caused his lung function to dip to a new low, Ayden also has the extremely rare lung condition hepato pulmonary syndrome.

HPS is normally only found in adult patients with advanced cirrhosis of the liver. And only a liver transplant will cure the HPS.

It is essential that his lung function improves so he is able to go on the liver transplant list.

His liver was damaged because of the numerous bowel problems he had as a young baby.

His only hope now is that Trikafta could help deal with the lung function so he would be able to have a liver transplant.

Tracey, her 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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