Peering at the article on the computer screen I felt a familiar rush of tears. As a health visitor, I knew it was a priority to remain on top of medical research but this latest news about drug treatments for cystic fibrosis (CF) sufferers hit a nerve.
It was June 2023 and I had just finished reading a feature about how a leading combination drug was now helping ease lung damage for those living with advanced CF. Average life expectancy for people with CF used to be around 30 to 40 years, but with new drug breakthroughs like this, it may have improved to 70.
It was, of course, wonderful news and would change the life of millions of sufferers worldwide. But not for my one-year-old son Oliver, who was diagnosed with CF in June 2022 when he was just three weeks old.
I’ll never forget the moment my husband Harvey and I found out. Oliver had been given all the usual blood tests when he was five days old and the midwife told us that if something was wrong we’d be contacted. Harvey and I forgot all about it, lost in our little newborn bubble, but then I received a voicemail on 1 June from Queen’s Medical Centre in Nottingham, asking me to bring Oliver in to discuss his blood tests.
By the time Harvey and I saw the consultant I had worked myself up into such a state that I was sure they were going to tell me our son was going to die. Yet I was thoroughly unprepared for the news they did have.
‘Oliver has cystic fibrosis,’ the consultant explained.
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