Step up for Ayden
CYSTIC fibrosis sufferer Ayden Cochrane is likely to die very soon if he doesn’t get access to a vital drug.
He is only 13 and has already had to discuss end-of-life care with his mum.
Although the drug, Trikafta, has still to be licensed in Europe, it can be distributed on “compassionate grounds”.
Ayden simply wants to make more precious memories with his family and this medicine could make that possible. But there is a waiting list for it. This brave lad has to lie in a hospital bed and hope he is lucky enough to get his chance before it is too late.
His predicament is intolerable. How can drug companies and politicians fail to act when a child’s life is at stake?
They must do everything in their power as a matter of urgency to make sure Ayden gets the fighting chance he deserves. Anything less is a moral outrage.
A BOY of 13 who is dying of cystic fibrosis is unable to access a drug which could help save his life.
The medication he needs, Trikafta, is not yet licensed in Europe and is unavailable on the NHS.
Now brave Ayden Cochrane is begging manufacturer Vertex to give him the medicine on compassionate grounds.
Speaking from his hospital bed, 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 it would mean everything to me to be able to see my wee brother and sister start school.
“I would love to have more energy to make more memories with my family and spend some time out of hospital because, for the last two years, I’ve spent most of my time here unable to do simple things.”
Ayden’s condition is at such an advanced stage that two weeks ago he had to discuss his end-of-life care.
Mum Tracey, 33, said: “His birthday is in April but right now April seems a long, long way away. We are doing an end-of-life wish list.”
In addition to the 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.
Bowel blockages are a symptom of cystic fibrosis and were the first indicator of his illness.
By four days old, he had already had three bowel operations. He was aged 18 months when he was able to leave hospital.
His only hope now is that Trikafta could help deal with the lung function so he would be able to just 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. She said: “Two weeks ago, Ayden was so poorly we thought it was his time.”
Ayden recently told her: “I know I am going to die. I just want to die enjoying myself.”
Vertex submitted a licence application to the European Medicines Agency in October but the drug is not yet authorised.
A spokeswoman said: “Due to the severity of cystic fibrosis and the high unmet medical need of CF patients, we do provide some of our unapproved medicines to patients, if requested by their doctors and under strict conditions in line with the law.
“We endeavour to make these decisions as ethically and fairly as possible, in line with various medically-driven criteria.”