“We first heard the words 'cystic fibrosis' from the health visitor at what we thought was a routine three-week appointment”
Squadron leader Nick Smith and his wife Amber, who are based at RAF Shawbury, north of Shrewsbury, have a 20 month-old-daughter, Charlotte, who has the lung condition cystic fibrosis.
“It is a rare day that an individual is faced with information that truly ends life as they know it in almost every capacity. The life you thought your precious baby was going to lead is simply gone - it is a grief that I still cannot put into words in truth, but my wife and I are learning to accept it.”
Under the current system, many people with cystic fibrosis will continue to incur an ongoing cost for their daily treatments through prescription charges, or will have to pay for the £108 annual pre-payment certificate. One person with cystic fibrosis described the charges as"essentially paying to stay alive”.
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