Smiles better! Six young cystic fibrosis sufferers finally get wonder pills
SIX young cystic fibrosis sufferers get their hands on boxes of lifesaving pills at last after fighting in our crusade to win an NHS deal.
Last year, all six spoke out in separate, tear-jerking Daily Express stories to plead for the medications produced by US firm Vertex.
Now, Rufus Wilson, five, George Monckton, nine, Ivy Weir, six, Charlotte Taylor, four, Charlie Foster, eight and Annabelle Brown, 20, have all got Vertex’s Orkambi or Symkevi drugs.
It follows the news that gravely ill Scottish sufferer Ayden Cochrane, 13, has finally been granted Vertex’s new miracle drug Trikafta.
Delighted little Ivy said: “These are my magic pills. It is very exciting and I am super happy.”
Throughout last year, we moved our readers by showing the ordeals the children must go through as they live with CF.
This included a heartbreaking image of sick Rufus lying ill in a hospital bed.
The mother of Charlotte also gave a shocking insight into the exhaustive daily physio routines sufferers go through.
Ivy’s mother Gemma Weir urged MPs to try breathing through a straw so they know how patients feel as she campaigned for the Vertex drugs. And student
Annabelle revealed she is training to be a scientist to find a cure for her cruel condition.
George’s mother Nicola Johnson said he has already started his Orkambi treatment.
And young Charlie is a little sad to get his pills – as it means he has to take “more tablets”.
Nicola, 42, of Sutton Coldfield, West Midlands, said: “The nurse who told us nine years ago George had CF was the one who handed him his box of Orkambi. It was a magical moment.
“Thank you Daily Express and all those campaigners who fought for our loved ones.”
Rufus’s relieved mother Claire Wilson, 40, of Weston-super-Mare, Somerset, told us: “I’m oozing with pride watching Rufus take his Orkambi granules.
“Something else that tastes yucky to add to his daily routine, but he just does it.”
Annabelle, of Guildford, who is studying an MSc in biochemistry, told us: “I have had a burst of energy and mentally it’s just a huge sigh of relief. I feel I can now start planning for the future.”
Mary Taylor, Charlotte’s mother, said: “Charlotte’s really happy now. Things are much better than they were now that we know she has Orkambi.”
Last October, our campaign victory saw the UK granted Vertex’s three current CF drugs – Kalydeco, Orkambi and Symkevi.
Now, we have launched a new campaign for Vertex’s upcoming pill Trikafta – available from May – that will help 90 per cent of all sufferers.
Our Battle For New Wonder Drug crusade has already generated plenty of support.
All last week, the Daily Express pleaded forVertex to supply sufferer Ayden with Trikafta, as doctors said he was slowly dying in intensive care in a Glasgow hospital.
And, after a front page story on Friday, Vertex looked again at his case and, 24 hours later, finally agreed to give him the drug.
Trikafta is not yet licensed in Europe, so the only way a UK CF sufferer can get it is via Vertex’s “compassionate use” scheme for the seriously ill.
Now,Ayden’s tears of joy can join the happy smiles of our six delighted CF youngsters.
George Monckton posing with his Orkambi in hospital, above; Charlie Foster carries his meds, right; Annabelle Brown shows her delight, below left; Ivy Weir celebrates, below right