A MUM has spoken of her joy that lifesaving cystic fibrosis drugs will be available on the NHS.
Around 5,000 NHS patients will now have full access to Orkambi, Symkevi and Kalydeco, following an agreement between Vertex Pharmaceuticals and NHS England.
Vertex said patients will be able to access the drugs on prescription within 30 days.
The breakthrough follows a row which dragged on for more than three years between the pharmaceutical firm and the NHS over the cost of Orkambi.
The drug is said to slow decline in lung function – the most common cause of death for people with cystic fibrosis.
Becky Windle, 37, who's daughter Molly-Mae, 11, was diagnosed with cystic fibrosis when she was just three weeks old, said: "I was at work when I found out - it was actually one of the other mums who I know who has a little girl with cystic fibrosis who messaged me.
"I just cried. I just went all goose pimpley, I could not believe it - we've been waiting for so long."
Mrs Windle said the family, who live in Clayton, had signed petition after petition in the fight to help people like Molly-Mae.
She said: "It's hard, it's really difficult.
"You know it's out there, it has been talked about for so long, for so many years.
"It's something I've tried to put to the back of mind - you know it's out there, you just want it 'now'."
Molly-Mae was "ecstatic" when she got home from school, St Bede's and St Joseph's Catholic College, and heard the news.
"I always remember, when she was diagnosed at three weeks old, the consultant turned to me and I was heartbroken, she was a tiny baby, he always said to me that these children are going to make history.
"That's something, when we've had bad times, I've always had in the back of my head.
"I always remember him saying that to me."
They were words which were even more poignant for the family when the news broke yesterday.
On a usual day, Molly-Mae has to take between 25 and 30 tablets a day, undergo physiotherapy, and use a nebuliser. She also has to take intravenous antibiotics every three to four months.
Despite her cystic fibrosis, the determined youngster is doing well.
"She likes to challenge herself - she has a fighting spirit and I always said it would never beat her," Mrs Windle said.
"This news yesterday was just unbelievable - it was so emotional."
And in true fighting spirit, Molly-Mae will join forces with her dad, Andrew, 42, and fitness coach to tackle Bradford City Run to raise money for the Bradford Hospitals’ Charity Rays a Smile appeal.
The appeal aims to raise £250,000 to make radiology services more child-friendly in Bradford’s hospitals. She knows first-hand how scary some scans can be for children as she has had to have regular x-rays since she was born.
Molly-Mae has entered into the children's run, next Sunday, but also hopes to complete the adult 5k too.
"I have had numerous hospital visits and appointments at my local hospitals in Bradford over the years," she said.
"I know how important it is for children to feel comfortable in hospital and how scary scans can be."
Molly-Mae’s personal trainer, Matt Crabtree, runs a cystic fibrosis programme at Nuffield Health, Cottingley, to help improve the fitness and wellbeing of children with the condition.
Paediatric radiologist, Dr LeeAnne Elliott, said: “Molly-Mae is a fantastic fundraiser for our Rays a smile appeal and this is an amazing challenge for her to undertake.
"She is a great ambassador for the charity and is always keen to help us improve our facilities for children who need X-rays or scans.
"Her endless enthusiasm for our cause is incredibly generous and we are incredibly grateful to her support. She really is a superstar."
Click here to sponsor Molly-Mae
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