Letchworth mum shares daughter’s ‘heartbreaking’ cystic fibrosis story
- Credit: Archant
The mother of a 19-year-old girl from Letchworth who lives with a genetic disorder has shared the “heartbreaking” story of her daughter’s rapidly deteriorating health.
This time last year, Emily Marvell was living life like any other 18-year-old would.
She had just finished her A-levels at Hitchin Girls' School, was working a part-time job and was hoping to be start university after the summer.
She was accepted into Nottingham Trent University, where she has been studying a life-long ambition - business and marketing.
Her mother Clare remembers the day Emily left for Nottingham well.
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"It was in September, and like any other parent I was so worried. With Emily's condition, I was definitely a bit more anxious.
"But she's a determined little bugger, to the detriment of herself sometimes."
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Emily has lived with cystic fibrosis, an inherited genetic condition for her whole life - but Clare insists you wouldn't have noticed her condition this time last year.
"She would get tired, but other than that she led a completely normal life," said Clare.
"You wouldn't have known about her cystic fibrosis, or picked her out of a crowd."
But Clare says she noticed some big changes in her daughter as early as October 2018.
By Christmas, while most students' empty pockets force them home for weekends, it was Emily's health that was bringing her back to Letchworth.
Since September, Emily has experienced intravenous therapy during the middle of the night, lost more than 10kg in weight and been forced to take more than 30 tablets a day.
She has studied for exams while hospitalised and when her friends went out partying, Emily often had to stay at home or in the hospital.
Clare says it's "heartbreaking to see" and thinks Emily has "missed out" on a large chunk of the university experience because of the worsening of her condition.
"As a mum, watching your child deteriorate is heartbreaking."
Nottingham Trent has worked around her condition and Clare says the university's support has been "nothing short of brilliant".
Emily has soldiered on - trying to make the most out of university and achieving a 2:1 grade, in spite of everything.
But, when Emily came home in June, Clare admits that she could tell her daughter wasn't right.
Alongside her drastic weight loss, Emily's lung capacity has dropped to just over half of its normal output.
Add this to her diabetic condition, the sluggishness and Scedosporium - a fungus that causes thick mucus to build up in her lungs - and Emily's life has turned upside down since last summer.
A family trip to Italy, and Emily's first holiday with her boyfriend are looking less and less likely with each passing day.
The thought of her daughter returning to university is even proving to be difficult for Clare to handle.
As Emily has begun to contend with the reality of her illness, Clare has been busy speaking with the NHS about potential solutions - as there are currently no permanent cures for cystic fibrosis.
The possibility of life-prolonging drugs has been raised, with an American firm offering a year's worth of supply for a fee that Clare describes as "ridiculous".
Vertex Pharmaceuticals - based in the United States - offer a prescription drug called Symdeko, which can slow Emily's declining lung function.
The cost is £159,000 for a year's supply.
READ MORE: Letchworth family launches fundraiserThe Cystic Fibrosis Trust has lobbied the government, NHS and big pharma companies to ensure precision medicines reach the people who sorely need them.
Clare says she was prepared to sell her house to get the money, but has now decided to see if a fundraiser can help instead.
She told the Comet: "This medication would be a life-changer. It would improve the quality of her life.
"I wish I didn't have to ask for this money, but I don't see any other choice.
"It's an awful, stressful situation. But, as her mum, what else can I do?"
Emily was initially reluctant, telling her mum she would be happy with raising £20. But the family have already raised more than £6,500 in a week.
Clare wants to say a big thank you to everyone that's contributed so far, and insists anything will help her daughter's cause.
"We've all been overwhelmed with the support. Everyone's been amazing."
To contribute to Emily's cause, go to www.gofundme.com/f/helping-emily-get-life-saving-drugs?ssid=1356758934&pos=1