Hayden Askins who has been in hospital for four months being treated for cystic fibrosis.
THE parents of an Isle of Wight boy with cystic fibrosis (CF) have made a heart-rending plea for a new 'miracle medicine’ to be made freely available on the NHS.
Hayden Askins, 15, a student at Sandown Bay Academy, was diagnosed with the lung disease when he was five and has spent the last four months in a hospital bed after his condition deteriorated significantly.
Now his parents, Julie and Andy, of Station Avenue, Sandown, are supporting a petition calling for the breakthrough drug, Kalydeco, to be given to their son and others like him, saying just two tablets a day could mean he could lead an almost normal life.
The medication could also help their youngest daughter, Aimee, 11, who has CF and faces a daily routine of medication and nebulisers.
Hayden, who carries the rare G551D mutation of CF, became critically ill after contracting pneumonia following a series of chest infections.
He is currently in Southampton General Hospital where he is being treated with antibiotics but is still too poorly to be transferred to St Mary’s or come home.
Kalydeco, which is produced by the American pharmaceutical company Vertex and costs around £182,000 per patient, per year, is the first drug that treats the root cause of CF, rather than the symptoms.
But a decision on making Kalydeco freely available on the NHS has been stalled until December.
Sandown Bay Academy is holding a cystic fibrosis awareness week in support of Hayden.
The petition can be found on the CF Trust website, www.cftrust.org.uk.
• For the full interview with Hayden’s parents, see the Friday, October 19, County Press.
Reporter: martinn@iwcpmail.co.uk