Leeds family praying five-month-old baby is given cystic fibrosis 'miracle drug' Kaftrio as NHS decision looms

Layla Sellers has had little normality in her short life.

The tot, described as a “ray of sunshine” by parents Rula and Connor, was diagnosed with cystic fibrosis at just three weeks old.

It’s a rare condition that causes sticky mucus to build up in the lungs and digestive system – and it can mean tragically short lives for those who suffer with it.

But families were given hope in recent years, after a drug was developed that was proven to boost lung function and overall quality of life.

Kaftrio, which is available to children over the age of two, has had breakthrough effects for those who might previously have been hospitalised with minor bugs and colds.

However, it was decided earlier this year by the National Institute for Health and Care Excellence (NICE) that the drug is too expensive to be recommended for use on the NHS. There is now a consultation ongoing to decide whether or not it should still be prescribed.

Those currently in receipt of the treatment will continue to be given access, regardless of the NHS decision – but for children like Layla, who has not yet had a chance to experience its benefits, the drug may never be available.

According to mum Rula, 36, denying the drug would be tantamount to a “death sentence”.

She said: “It’s like they’re saying your child isn’t worth it. Waiting for the decision is just torture. It’s horrific. I don't know what other words there are to describe it.”

Layla’s parents, from Rothwell, discovered their daughter had cystic fibrosis after a heel prick test, which is given to babies five days after birth and can pick up any one of nine rare health conditions. They were phoned soon after by a health visitor, who told them they’d need to be seen by a nurse.

"It’s every parent’s worst nightmare,” said Rula, who works in financial services. “I’ll never forget that day. It felt like the end of normality for us.”

The effects of the condition on Layla were immediately apparent. At three weeks old, she caught a cold – which quickly developed into pneumonia. Since the diagnosis, she has been hospitalised, undergone surgery and put up with two weeks of IV therapy.

She is currently fighting off a bacteria that is notoriously dangerous for cystic fibrosis sufferers and is on her first week of antibiotics.

But despite her struggles with the condition and her young age, Layla’s personality still shines through.

"She’s a beautiful, happy baby,” said Rula. “She’s always smiling and she loves people. She’s just a ray of sunshine.”

It’s estimated that around 11,000 people in the UK have cystic fibrosis. They include Nellie Watson, six, from Roundhay.

The youngster has been on Kaftrio for a matter of months and has already seen the benefits, according to mum Kirsty, 34.

She said that it “breaks her heart” that other children could be denied the same treatment – and has been calling for NICE’s recommendation to be rejected.

A decision on whether the drug will be available on the NHS in the future is expected on March 20.