Call The Midwife's Jenny Agutter has appeared on This Morning with her 13-month-old great-nephew – who suffers from cystic fibrosis – to call on the government to provide a life-changing drug on the NHS.
Baby Albie stole the show as he crawled around the studio while Jenny and his mum, Georgie chatted to Eamonn Holmes and Ruth Langsford. But behind the cheeky smiles, they revealed the little boy – who was diagnosed at four weeks old – will suffer a lifetime of lung trouble without access to the drug, and urged the US pharmaceutical company who manufacture the medicine and the NHS to come to an agreement.
Jenny explained that agreements have been made all over Europe to provide patients with drugs like Orkambi, but negotiations here are currently at a "deadlock", denying sufferers like Albie the treatment they deserve to prolong and enhance their lives.
"I have no doubt an agreement will be made, it's just a case of when," Jenny said.
"Let's do this now, rather than later," she added. "It will happen, but if we do it now, we'll save many more lives."
There's no cure for the genetic condition, which affects 10,500 people in the UK and causes a build-up of thick sticky mucus in the lungs, digestive system and other organs to get worse over time. About half of those with the disease are expected to live until their mid-40s, This Morning's Dr Ranj explained.
"It's better than it used to be, but obviously we still have a long way to go," he said.
Albie currently has physiotherapy twice a day and enzyme-replacement therapy to keep symptoms at bay. "For now he's doing really well," mum Georgie said.
Jenny knows only too well the impact the debilitating illness can have: her niece, Rachel McGrath, who is Albie's aunt, also suffers from the condition.
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