Mum, 40, who wasn’t expected to live past her teens starts new drug trial
PUBLISHED: 07:30 15 June 2020 | UPDATED: 12:29 15 June 2020
A mum living with cystic fibrosis in Mendlesham has been given a new lease of life on a drug trial, despite being told as a child she’d never live past her teens.
Sammie Read got married at 19 and had her son three years later in an attempt to do as much as she could during her short lifetime.
However, the strong-willed mum has surpassed all expectations by surviving to the age of 40 and was encouraged by her mother from an early age to take every opportunity she could.
When she stayed at the Royal Papworth Hospital for five weeks at the beginning of the year suffering from a partially collapsed lung, doctors proposed putting her forward for a new drug trial.
“I had been staying in hospital for about two weeks every three months or so consistently,” Sammie explained. “I was so ill in January and the doctors just didn’t know what was wrong.
“They told me if I could improve my statistics in a few months they would agree to put me forward for the trial.”
Trikafta has been submitted to the European Medicines Agency and is currently available in the UK on compassionate grounds.
The 40-year-old was enrolled on Project Breathe where she used an app to track data from her body, allowing doctors to spot symptoms of health decline much earlier, and four weeks ago the results meant she could begin the drug trial.
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“Within about six hours I felt better,” she said. “I was coughing up so much mucus and I was saying to my husband Ewan ‘where is it coming from?’
“It cleared my lungs out so much as they started rejecting the mucus and my lung function went up by 10% in two weeks.
“It has been amazing and a total game changer for me.”
Sammie welcomed the drug trial as she was starting to see more major milestones in her life such as her son Bradley, now 19, buying and moving into his first home in Stowmarket.
She and her husband are hoping to be able to visit Bradley for a housewarming once the risk from Covid-19 reduces as they have been shielding since March.
Over the years Sammie has fundraised for the Cystic Fibrosis Trust and at her 40th birthday ball late last year she raised approximately £20,000.
She has now started a YouTube channel to document her life during lockdown and has shared updates on how the drug trial is improving her health.
Monday June 15 to June 21 is UK Cystic Fibrosis Awareness week and the Cystic Fibrosis Trust is fundraising to continue to their vital work.
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