Portsmouth girl with cystic fibrosis delivers hundreds of letters to Downing Street

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MORE than 1,000 letters calling for a life-changing drug to be free have been delivered to Downing Street.

Four-year-old Ivy Weir, from Portsmouth, knocked on the black door of number 10 and handed over the letters written by children and young people with cystic fibrosis.

Gemma Weir and her four-year-old daughter Ivy, from Portsmouth, accompanied by Grace Paget from the Cystic Fibrosis Trust, delivered hundreds of letters to Downing Street calling for drug Orkambi to be free

Gemma Weir and her four-year-old daughter Ivy, from Portsmouth, accompanied by Grace Paget from the Cystic Fibrosis Trust, delivered hundreds of letters to Downing Street calling for drug Orkambi to be free

As previously reported they are asking Prime Minister Theresa May to make Orkambi, which stops cystic fibrosis from getting worse, to be available for free.

Gemma Weir accompanied her daughter Ivy, who has the condition, to London with the box full of letters.

The 34-year-old said: ‘It was a great day but also very emotional. We were handing over letters that meant a lot to the people who had written them.

‘It was an honour to deliver them and it was a big moment for Ivy too. She is my inspiration in doing all this so it was important for her to be there.’

It was an honour to deliver them and it was a big moment for Ivy too.

Gemma Weir

Portsmouth North MP Penny Mordaunt helped organise Gemma and Ivy going to Downing Street.

She said: ‘I was delighted to help Ivy and Gemma deliver the petition.

‘I set up the Life Science group in parliament to ensure we are keeping investment into medical research strong and that we are increasing the take up of new drugs by the NHS.’

Families of children and adults with cystic fibrosis, which causes a thick mucus to form on the lungs and digestive system, have been supporting a nationwide campaign to get Orkambi on the NHS.

A petition for it to be discussed in parliament got 114,000 signatures and a debate took place in March.

The letter idea was started by Luis Walker, seven, from East Sussex, who wanted to write to Mrs May.

Gemma, from Paulsgrove, added: ‘A lot of parents were writing to MPs asking them to support the campaign. Luis wanted to get involved and then other children started writing letters.

‘It is amazing how far the campaign has come in the last few months. It feels like we are closer to getting Orkambi and precision medicine.’