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30 October 2019
Vol 26 l Issue 44
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Cancer survivor opens charity’s new shop
MUM HOPEFUL AFTER ‘WONDER’ DRUG MADE AVAILABLE ON NHS New treatment could mean better quality of life for cystic fibrosis sufferers Report by Kenny Parker A WEST Lancs mum of two young children with cystic fibrosis is celebrating news that a ‘wonder’ drug - which she believes will allow them to have a better quality of life - is to be made available on the NHS! Three-year-old Sienna Woods and her brother Noah, two, have spent much of their short lives in and out of hospital after being born with the incurable and life-shortening genetic disorder which causes mucus to collect in the lungs. Now though, mum Shelby is hopeful that the pair will benefit from being treated with a drug called Orkambi, which effectively ‘silences’ the gene that causes cystic fibrosis and thins the mucus on the lungs, Although approved for NHS use in 2016, it has been unavailable due to protracted arguments about the cost, with charges of £100,000 per patient per year originally quoted. However, following a confidential deal with manufacturer, Vertex Pharmaceuticals - believed to be significantly less - patients should be able to get the drug within a few weeks. And Shelby says she is “overwhelmed” after hearing the news while taking the children to yet another hospital appointment for an eye operation and to treat another infection.
Mum Shelby Woods with Noah and Sienna.
The 25-year-old and her partner Martin from Burscough previously featured in the Champion when fundraising to buy a machine to help them to perform physiotherapy on their children at home. She said: “When I found out the drug was going
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to be made available it was just so overwhelming I was sobbing. “We were actually taking the kids into hospital for another two-week stay at the time. I didn’t believe it at first and I thought that maybe they had got it wrong or that Sienna and Noah wouldn’t be the right age group as some of the medication is only for 12 years or above. But luckily this one is for children aged two years and upwards.” Shelby says she hopes that the children will now be able to put on weight and have the strength to fight off the frequent infections brought on by the condition without repeated trips to hospital “The hospital trips really take a toll. Even doing one admission every six to 12 months is a strain, but recently we have had three admissions with the two of them in only 15 weeks. “Now we are hoping when they have finished their current treatment, it will only be two weeks before they can begin the process to take the new drug. “There are a few side effects but once you get past the first few weeks it is meant to be amazing. Orkambi will hopefully help them put on weight, become healthier and build up their immune system so they won’t get as many bugs and will hopefully not have to be in and out of hospital all the time.” The announcement has also been welcomed by West Lancs MP Rosie Cooper who has been part of Continued inside
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36 Derby Street West, Ormskirk, L39 3NH
Dad’s concert ‘thank-you’ to hospital
Pals reunited ... Albert and Bill pictured holding a photo of themselves taken during their service in Korea.
War pals reunited after 66 years thanks to Champ! TWO West Lancs veterans who struck up a friendship while serving side by side in the Korean War have been reunited after 66 years thanks to the Champion! Bill Abram from Halsall and Albert Briscoe from Burscough became pals while both were attached to the Royal Army Ordiance Corps supplying vital supplies to front-line troops during the 1950-53 conflict. But while Bill was taking a well-deserved three-week leave in Tokyo, Albert was transferred. And when Bill returned, nobody could tell him where his pal had gone! Over the years, Bill, now 86, says he often wondered what had happened to his friend but despite living only a few miles apart the pair’s paths never crossed again. Then, Bill saw our front page story in September about Albert receiving an Ambassador For Peace award on behalf of the government of South Korea for his part in the war and contacted us. We were able to pass on contact details and now the pair are rekindling their friendship. Continued inside
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