‘My baby delight’: Dying CF sufferer saved by our crusade for wonder drug

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Nicole Adams told us: “I knew I was dying and I prayed that if I did make it through, this is what I wanted – a family and a baby.”

“It is strange to look back and think of how ill I was and compare it to how much better I feel.”

“My lungs were only working at 10 percent, and now they are working at 37 percent, which is a massive change that, trust me, you notice.”

Cystic fibrosis (CF) is a genetic condition that clogs the lungs with thick mucus. There are 10,600 sufferers in the UK.

In the summer of 2020, a Daily Express campaign for wonder pill Kaftrio to be made available on the NHS secured an incredible victory.

All sufferers aged six and over who are suitable to take the drug can now have it.

But Nicole, 30, of Newtownabbey, County Antrim, suffered a deterioration in her health in December 2019, before the pill was approved for the NHS.

She was put in a CF ward and hooked up to an oxygen machine to keep her alive.

She managed to take off her oxygen mask to phone the Express from

Belfast City Hospital and say: “I’m so scared – I’m dying. What can I do?”

Then she wept as she bravely tried to sing Elton John’s hit I’m Still Standing.

She also told us she refused to be placed unconscious on a ventilator, saying: “I don’t wanna go there – no one ever comes back.”

As her loved ones prepared to say their final goodbyes, we helped her secure Kaftrio under US pharmaceutical giant Vertex’s compassionate scheme for gravely ill patients. Two-and-a-half years later, not only is Nicole back working as a hairdresser, she is 18 weeks pregnant.

Her loyal partner Ciaran McVarnock, 30, does not have CF but carries the mutated gene, meaning there is a high chance their baby could be born with the cruel genetic condition.

Nicole said: “When I found out in February that Ciaran and I were expecting an unplanned baby my first feeling was shock and I felt sick with worry over what might happen.

“We have wanted a baby for years but always thought it was a dream for the future as I was too ill to ever have a child. Now my health has soared, doctors are happy for us to go ahead.”

Nicole says her medical team has assured her it’s safe to continue taking Kaftrio during pregnancy, and it may give added protection to her baby.

If her baby has CF, Nicole said: “We will handle it. No matter what, this baby will be loved.”

The couple are co-organisers of a football match for the CF Trust charity on July 9 at Seaview FC’s ground, Belfast.

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