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Delight for cystic fibrosis teenager after Orkambi drug decision

The mother of a girl whose emotional reaction to hearing she could get a life-extending drug went viral says they are “overwhelmed” by the response.

Beth Finn, from Staffordshire, shared the video of the moment 13-year-old Isabelle burst into tears after finding out cystic fibrosis drug Orkambi would be made available on the NHS.

The footage has been watched tens of thousands of times on Twitter.

Mrs Finn said the news “meant so much” to her daughter.

Isabelle was diagnosed with cystic fibrosis – a genetic condition that causes sticky mucus to build up in the lungs and digestive system – at 15 months old.

Orkambi has been found to improve lung function and reduce breathing difficulties.

After it was announced earlier this week NHS England had reached an agreement with its manufacturer Vertex Pharmaceuticals, patients will now be able to get the drug within 30 days.

Mrs Finn, who lives near Tamworth, said she filmed her daughter’s reaction to share with friends who had followed their campaign to make the drug and other medications available.

She said she “never expected” the response it had received.

In the video Mrs Finn is heard telling her daughter in their car that “in 30 days we’ll be able to get a prescription”.

Isabelle replies, between tears, saying “really?” and “so good”.

‘Touched people’s hearts’

She then gets out of the car and hugs her cousin.

“It is the innocence of the reaction that has touched people’s hearts,” Mrs Finn said.

“I don’t think Isabelle can get that it has gone so big.

“For her it is just relief there is actually some medication she can take that will change her life and make her feel better, she is finding it really quite emotional.”

The video also attracted a huge response since being published on the BBC News website.

On Facebook, Tina Baxter said: “Bless her, what wonderful news.”

While Kim Frances Burns added: “What fantastic news. So, so happy for you.”

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Source: http://www.bbc.com/news/uk

 

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