Leeds family overjoyed as lifesaving cystic fibrosis drug given green light on NHS

A family from Leeds with two young children with cystic fibrosis have shared their joy after a lifesaving treatment was given the green light on the NHS.

By Abbey Maclure
Friday, 25th October 2019, 7:00 am
Laura and David Venner with two of their five children, 6-year-old Abbie and 3-year-old Oliver. Abbie and Oliver have cystic fibrosis.
Laura and David Venner with two of their five children, 6-year-old Abbie and 3-year-old Oliver. Abbie and Oliver have cystic fibrosis.

Laura and David Venner, who live in Hunslet, have campaigned for the NHS to fund the drug for over four years.

They have two young children who suffer with the condition, 6-year-old Abbie and 3-year-old Oliver, and are overjoyed that their lives could be extended.

The children will now have access to the drug Orkambi which is said to slow decline in lung function - the most common cause of death for people with cystic fibrosis.

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Thechildren willnow have access to thedrugOrkambi which issaid to slow decline in lung function - the most common cause of death for people withcystic fibrosis

-> Yorkshire woman born in Headingley pub celebrates 108th birthdayThe treatment would have cost the Venner family £100,000 per child, per year and could now be administered within 30 days.

David said: “When Laura told me the news I was dubious, I never trust anything as you learn to expect the worst.

“When we saw that it was confirmed by the NHS, Laura burst into tears.

“Hopefully, although you can never say never, this means we won’t have to bury our own children.

Abbie is encouraged to exercise to prevent chest infections, which can leave her in hospital for over two weeks

“If the treatment is as successful as what the trials are making out, they will hopefully out-live us.

"For this family, something like this is better than any lottery win. Health is so much more important than money.”

Along with two other drugs, Symkevi and Kalydeco, the treatment could help around 5,000 patients in the UK following an agreement between Vertex Pharmaceuticals and NHS England on Thursday.

In 2014 when Abbie was just a baby, the YEP backed a campaign to raise £8000 for a specialist 'vest' machine to help loosen mucus - which is now used to help Oliver.

The Venners have since been campaigning with other families across the country, sharing petitions and trying to raise awareness of how the drug could change their lives.

Laura said: "We are ecstatic, overwhelmed, emotional - today doesn’t feel real!"

David added: “It’s like Christmas has come a month early. Abbie and Oliver don’t really understand what the treatment will mean to them, but we’ve told our older daughter Sophie and she is over the moon.

“It’s a big relief, like a weight has been lifted off your shoulders."

-> Leeds mum creates magical movie room for Harry Potter mad daughterLaura and David have three other children: 15-year-old Sophie, 3-year-old Maisie, who is Oliver's twin, and 4-year-old Thomas who suffers with epilepsy.

David has recently given up his job as a transport manager for Tetley to care for Oliver full-time. Oliver also has cerebral palsy and abnormal brain development caused by polymicrogyria.

The parents provide round-the clock care for Oliver when he is not at his specialist nursery; administering his medicines, putting him in the physio vest and performing manual percussion on his chest to relieve mucus.

Both Oliver and Abbie are frequently admitted to the Children's CF and Respiratory Unit at Leeds General Infirmary and are sometimes in hospital for up to two weeks with severe chest infections.

David said: "With the two of them being in hospital so much over the years, we look at some of the staff as family.

“They are so amazing. The care over the years has been second to none.

“On an evening you can ring the ward for advice, or when the kids are in hospital they always have time for somebody to come and sit and talk to you if you want reassurance.

“There is a playworker on the ward called Tracie who is brilliant, Abbie has really grown a bond with her. They absolutely adore each other.”

David says staff at the Children's CF and Respiratory Unit will be calling all patients that could be treated by the drugs to discuss their options.

The family hope the groundbreaking NHS agreement won't only extend the lives of Abbie and Oliver, but also help many other cystic fibrosis sufferers in years to come.