New cystic fibrosis drugs could offer baby Ella Ray hope

Ella-Ray does "Water Baby" swimming lessons which is good for her lungs. (Andrew Dawley, Sunday Post)

BABY Ella Ray looks the picture of health splashing about in the pool.

But this isn’t just an ordinary fun dip in the water. Mum Lisa Clark is hoping Ella Ray’s weekly swim sessions will help to give her a fighting chance at a longer, healthier life.

Every time three months old Ella Ray bobs under the water, holds her breath and kicks out with her little feet, she’s helping to build up her tiny lungs, making them that bit stronger in the fight against the crippling effects of cystic fibrosis.

She was only two weeks old when she was diagnosed with the life-limiting condition, which can eventually leave sufferers struggling to breathe as thick, sticky mucus clogs up the airways and organs.

Mum Lisa, 29, from Kilsyth, hopes that by sending her to fun Water Babies swimming sessions now, she can start building up her strength, so she’s better placed in the future to cope with whatever might lie ahead.

“Swimming really helps her because she has to use her lungs,” says Lisa. “Because there’s no cure for cystic fibrosis yet, it’s all about trying to do as much as we can to prevent its progress.

“And while her chest is clear just now, I want to get her used to physical activity so she can cope better in the future.”

Sadly, cystic fibrosis gets worse over time. And while there are treatments to help keep symptoms at bay, the outlook for many patients is bleak.

Last month, we revealed how a new drug has brought hope for many cystic fibrosis patients and their families, but at £104,000 for a year’s supply, it has been deemed too expensive for general use in Scotland.

Dad-of-one Robert Barker, 34, was given a revolutionary treatment called Orkambi after cystic fibrosis caused his lung capacity to deteriorate.

After months in Glasgow’s Queen Elizabeth University Hospital, the architect technician from Carstairs in Lanark, made an incredible recovery and is now able to enjoy cycling with his daughter Katy, six, and look forward to a holiday.

Today, Ella Ray’s mum Lisa joined the calls for Scottish health chiefs to strike a deal with Orkambi’s manufacturers, Vertex, to make it more accessible here.

She said: “We don’t know what the future holds for Ella Ray.

“I know the drug is expensive, but the cost shouldn’t come into it when you are dealing with people’s lives.”