TYLER’s STORY
THREE-year-old Tyler Swinfen has been on antibiotics for the whole of his short life as he battles cystic fibrosis daily.
Tyler has spent weeks in hospital with a potentially deadly bug and sometimes gets so distressed he makes himself sick.
His mother Rebecca, 28, summed up the US wonder drug Orkambi in one word: “Hope.”
Rebecca, of West Bromwich, said: “I can’t tell you how frustrating it is that we can’t access it.
“You should never have to think about your child dying before you.”
Tyler was diagnosed at just three weeks in hospital from the heel-prick test introduced in 2007.
Until then Rebecca and husband Rickki had no idea they had the faulty gene responsible for the condition.
She went on: “We have to do physiotherapy twice a day and he has two different nebulisers twice a day.
“He’s constantly on antibiotics. There’s been no break in three years.
“He’s also had four hospital admissions for the pseudomonas bug. It colonises in the lungs and can cause a rapid deterioration.”
She added: “Although Orkambi is not a cure it would be a great weight off our minds.
“It’s potential for him to live a relatively normal life. It would be life-changing for the whole family.”