'˜Please can I have this vital drug'
A Blyth schoolboy has written to the Prime Minister asking for her help in enabling him to benefit from a life-changing drug.
Michelle Foster has been organising events and activities over the last few years in aid of the Cystic Fibrosis Trust.
She raises money for the charity as her six-year-old son Charlie, who attends Newsham Primary School, suffers from cystic fibrosis (CF), which affects the lungs and digestive system.
Earlier in the year, she saw a post on Facebook about the campaign to get Orkambi on the NHS. Trials have found that the combination drug can halt or even reverse lung damage in children under 12 years.
A petition for it to be discussed in parliament got 114,000 signatures and a debate took place in March.
Orkambi has been approved for use in other countries, but is not yet available on the NHS because its £104,000 a year per patient price tag has been deemed too expensive.
Talks have been held between US-based pharmaceutical firm Vertex and NHS England to see if a compromise can be reached and another meeting was due to take place earlier this week.
One of the campaign ideas that really took off was the suggestion for children across the UK to write a letter to Prime Minister Theresa May.
Charlie’s letter included the following: ‘I am six years old. I have cystic fibrosis. I need a drug called Orkambi, please can you let me have it.
‘Thank you, from Charlie.’
Although he is doing ok at the moment, he wrote the letter from a hospital bed last month. He was in the RVI for two weeks as nasty bug had grew on his lungs.
Michelle said: “The current situation is frustrating because we need Orkambi in the UK as Charlie deserves to live a life unlimited. I will try my hardest to help in the fight against CF as nobody wants to outlive their children.
“The average life expectancy for people with CF is 40 years, but not everyone with it is that lucky as young children die because of CF, which I find devastating and scary as a CF mam to a young child.”
A young girl who has CF from Portsmouth and her mother have now handed over the letters to a Government official at 10 Downing Street.
Michelle is preparing to do another charity walk for the Cystic Fibrosis Trust. It will take place from Tynemouth Priory to The Commissioners Quay Inn pub in Blyth on Saturday, July 7, starting at 11am.
Members of the public are welcome to take part. They are asked to raise and/or donate a minimum of £20.