Letchworth family launches fundraiser after daughter’s health deteriorates
PUBLISHED: 16:56 14 July 2019
A Letchworth family has launched a public fundraising appeal after their 19-year-old daughter’s health has significantly deteriorated.
Emily Marvell was born with cystic fibrosis, an inherited genetic condition that causes lung and digestive problems.
Living with cystic fibrosis means Emily gets thick, sticky mucus building up in her lungs and digestive system, alongside a related diabetes condition.
Although there is no cure for CF, there are treatments available that improve the teenager's quality of life.
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Emily has over three hours of treatment daily, including physio, receiving IV antibiotics and taking over 30 tablets each day.
Her health has deteriorated greatly over the last year and she has suffered permanent damage to her lungs and significant weight loss.
Clare, Emily's mum, has been locked in a battle to get her daughter Symdeko, prescription drugs which not currently available in the NHS.
Vertex, an American pharmaceuticals company, has quoted the family more than £159,000 for a year's supply of Symdeko.
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