PLEASE ...DON’T LET MY SON DIE
Mum begs for drug to save boy, 13
THE MOTHER of stricken Ayden Cochrane last night made a desperate appeal to save her son’s life by giving him access to a wonder pill.
Only seven months ago the young cystic fibrosis sufferer had guests in hysterics when he spoke at his parents’ summer wedding.
Now his family fear the 13-year-old has just days to live and needs full
life-support without US drugs firm Vertex’s CF treatment Trikafta.
The drug is not yet licensed in Europe but since July, Vertex has given it free to 120 UK sufferers under their “compassionate use” scheme.
Ayden’s consultants have warned the firm that only Trikafta can halt his deadly decline.
But despite pleas to Vertex from the Daily Express the schoolboy is still waiting.
His mother Tracey said 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.”
Earlier this week battling Ayden told Tracey, 33, of Johnstone, Renfrewshire: “I’m scared I’m dying.” Harrowing pictures, released with his family’s consent, show the youngster is now so swollen with fluids that he is sleeping all day with his ears blocked up and unable to hear.
While he waits in a paediatric intensive care unit, Vertex has suggested that Ayden try their less effective pill Symkevi.
But he has tried it before and it failed to work.
His doctors say only Trikafta can halt his deadly decline for long enough for him to get the liver and bowel transplant he needs.
Defiant Tracey said: “Ayden is so strong he is determined to try to get better.”
But she added: “He won’t have long to live, just a few days, if he doesn’t get help very soon.
“His situation is that serious. He will be 14 soon but the other night he told me he was really scared. It’s so upsetting.”
Tracey is keeping a constant vigil at her son’s bedside in Glasgow’s Royal Hospital For Children.
She continued: “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 round a pitch playing football and being active. Now he needs a machine to aid his breathing.
“He is just sleeping all the time now. Ayden has no time– he must get Trikafta now.” Tracey, her husband Paul, 33, and their other four children Cody, 15, Dylan, 10, Lucie, four, and Rueben, two, are still hoping for a change of heart from Vertex
At Christmas the Daily Express helped “dying” Nicole Adams, 28, from Belfast, get given Trikafta in intensive care.
Weeks later she is out of hospital, smiling and back home in County Antrim.
Nicole has been speaking to Tracey to lend her support and advice and has written a moving plea to Vertex (see right). Earlier this week speaking from his hospital bed, Glasgow Rangers fan Ayden 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.
“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.”
Last night Vertex stressed that their medical team are in “close contact” with Ayden’s consultants.
The firm 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 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 for home.
By 18 months a third of his bowel had been removed. And since the age of three he has needed a feeding tube that goes into his stomach.
His liver then started to deteriorate and he has now developed advanced liver disease and various bowel issues.
Ayden also suffers from CF-related diabetes and a rare lung complication caused by cirrhosis of the liver.
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 intensive care to aid his breathing and at night a machine breathes for him as he sleeps.
Removes
He needs 68 litres of oxygen a minute, almost the highest amount any UK hospital can give to a patient.
Tracey says if Ayden removes his breathing tube just for one minute his carbon dioxide figures “go through the roof”.
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 have the power to help him and do something incredible and genuinely ‘compassionate’ in the true meaning of the word.”