Classmates join youngster's fight for cystic fibrosis drug
A Stafford youngster's classmates have all written to the Government to try and get him a drug to treat his cystic fibrosis.
William Smith, aged 10, takes four nebulizers, has up to an hour of physio and takes about 25 tablets on a normal day.
The Cooper Perry Primary School student's mother Emma said the drug, Orkambi, is not available in England as it would cost more than £100,000 per patient per year.
MP Jeremy Lefroy visited William's school on May 24 to meet the pupils and answer their questions about why the drug is not available.
Emma, 42, said the drug is a 'precision medicine', whereas all the treatment he has at the moment is to help his symptoms.
"The drug would basically help to stop lung decline by 42 per cent which is the main cause of death for cystic fibrosis," Emma, from Castlefields, added.
"William generally is well. He had a collapsed lung back in September due to an infection and he will quite often get different bugs.
"In the last 12 to 18 months we've noticed more of a decline, he had a CT scan which showed he has scarring already which will be there all his life.
"We wanted him to be a little boy and live a normal life as possible but we went to a meeting in March hosted by the cystic fibrosis trust who said we needed to make as much noise as possible."
William's class have all learned about cystic fibrosis, written to the Government and are arranging fundraising days.
Emma, a teaching assistant at Cooper Perry Primary School, said she was "overwhelmed" by the school's support.
"It's overwhelming, it's been really really heart warming.
"It would be absolutely incredible if it was Theresa May's legacy to get this on the NHS."
