But now the teenager, of Limehouse, east London, has been forced to drop her plans – as her CF has left her unable to study three A levels. She told us: “I feel very upset and frustrated that CF has meant that I can’t fulfil my dreams, however hard I work. I wanted to become a doctor but now I have had to drop one of my A levels because I missed so much school because I was always in hospital. It is even worse now that there are medications soon available that could give me a chance to live a full and normal life, but I can’t have them.”

Grace was diagnosed with CF after suffering a serious bowel blockage as a baby – digestive problems that have haunted her all her young life.

At the time her parents Tim, now 49, and Emma, 50, were reassured by doctors that amazing drug treatments were on the horizon.

But as the years went by and the drugs failed to appear, the promising young athlete and runner has slowly had to forgo her dreams.

Champion Grace, who had been her borough champion in the 1,500 metres, had to stop competing in races because she felt so poorly.

Her mother Emma said: “About four years ago she was feeling ill all the time, feeling bloated and suffering severe discomfort. She was missing races so with great difficulty she came to terms with having to stop running.”

The next thing CF took from Grace was her dream of being a doctor.

Emma said: “It’s hard to watch this talented and caring young woman being forced to accept a blighted future.

“She has recently had more major surgery on her gut, this time to divert her small intestine through a hole in her abdomen and into a bag.”

Grace is not suitable for Vertex’s Orkambi but would be for their soon-to-be-approved Triple Therapy wonder drug, which can help around 90 percent of CF patients.

But with the Orkambi NHS stalemate, at this rate when the Triples are licensed next year in the UK, Grace will still not be able to access them.

Describing her anger at the lack of a Vertex deal, mother-of-two Emma fumed: “It is a national embarrassment that people like Grace are being allowed to suffer in this way when the UK Government could give them access to transformational drugs.

“The Vertex Triple therapy is going for a licence soon in the EU and could completely change Grace’s life.

While this stalemate goes on and on, yet more children with CF will have to forget about their dreams.”

The Daily Express has been crusading for NHS England to strike a deal with US drugs giant Vertex for their pipeline of CF life-saving drugs, like Orkambi.

We have revealed how, disgracefully, in the three years Orkambi has been available, 250 sufferers have needlessly died.

When it refused the NHS’s £500million offer last July, Vertex withdrew from negotiations until we aided both parties to meet in March for talks.

But as a frustration over “no deal” grows, a “CF Buyers Club” has been created – to import an Orkambi “copy” from Argentinian drug firm Gador instead.

The generic version can be made in SouthAmerica Asvertex holds no patents there at a cost of £23,000 per patient per year.

The list price for Orkambi is £104,000 a year, although Vertex has offered a “significant” discount to the NHS.

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Carlie’s diary…even doing simple things was difficult

In her Daily Express diary, CF sufferer Carlie Pleasant reveals she is now on a course of powerful steroids – trying to shake off a nasty new lung bug.

Married mother-of-one Carlie, 29, told us: “Last week was CF week and I was given the opportunity, via the Cystic Fibrosis Trust’s social media page, to speak to other sufferers, which can be therapeutic.

“It allows you to remember that someone else does know how you feel even though you feel so alone.

“It allowed my week to start on a high but after a home visit from my CF team and a very disappointing lung function result, I was left feeling very upset and found myself, yet again, worrying about my health. I’ve been feeling extremely breathless. Even doing simple things such as walking around the zoo with my little boy was so difficult.

“I sat down and cried to my husband about how I felt scared and I needed some extra medical help.

“It was decided that the best course of action would be steroids.

“I’ve only just finished antibiotics yet blood tests show high levels of mould-based lung infection aspergillosis.

“So I’m hopeful that my steroids will ease symptoms and allow me to get back to being a mummy.

“My tablet intake is 77 per day. Orkambi could reduce this by 50 percent!”

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