Tonia’s Story: “Doctors told my mum that I wouldn’t see 18... last year I turned 50”

CF diagnosis

I was diagnosed with CF at three months old. My mum knew something wasn’t right straight away - continual crying and no sleep; she would take me to the GP, but they’d send her home saying she was just being a paranoid first-time mother (even though she had my sister two years earlier). It got to the point where she was going backwards and forwards and not getting any answers. One night she was at her wits end and, the following morning, took me straight to the GP surgery and demanded to see a doctor. She refused to leave without a referral letter for a specialist hospital.

She went to the hospital the following morning and they admitted me straight away. They ran some tests and a few days later they rang my mum to say I had CF. It turned out I’d spend the entire first year of my life in hospital. 

At the time, my mum had no idea what CF was, but after she read about it and saw that it predominantly affected people from a Caucasian background, she did question if it was because I came from an ethnic minority background that the doctor had immediately said I was fine. I think it’s important for people to know that it doesn’t matter what background you’re from, CF is a condition that can affect anyone. 

Growing up with CF

When I was younger, I was always putting up a fight because I didn’t want to do my treatments or go to hospital: I had spent so much time there already and didn’t want to go back. 

If I had any advice to young people with CF, it would be to do the opposite to me and stick to your treatment regime and go to your hospital appointments! I think you don’t want to be seen as the person at school who’s always ill; you want to be part of the ‘normal’ crowd, so you almost divert away from doing what you know is good just to fit in. It probably had an effect on me health-wise because I didn’t stick to my regime. It’s easier said than done, but it’s so important. 

Turning 50 and the impact of Kaftrio

Doctors told my mum that I wouldn’t see 18, so hitting 50 was a big moment for me. It was quite emotional. I remember waking up that morning and thinking that this was really quite wonderful; something extremely special. I think Kaftrio played a massive part in this. My lung function was hovering around 40 to 45% and I had to have a big operation in 2020, so to be offered Kaftrio in 2020 was a lifeline.

Between work and family, I’m pretty much constantly on the go, so Kaftrio has been amazing in terms of giving me the energy to do all that. 

Motherhood

I have two daughters; one is 24 and one is 13. With my first daughter, we were trying for a while, and nothing was happening so I thought that I was never going to be a mum. After two years of trying, my GP suggested I try IUI (a fertility treatment). I was referred and it didn’t work the first time, but it did work the second time. I remember getting that line on the test and being so shocked and happy. There can be a misconception, especially back then, that women with CF can’t have children, that it was too much health-wise to carry a baby. I was nervous the whole way through my pregnancy because I thought something bad was bound to happen. It was quite a moment when she was born. I had her when I was 26, so not only did I defy the odds of getting past 18 but I defied the odds of having a child. I thought I must be doing something right if I’m here and in this position. 

A life unlimited

A life unlimited means to me that I can do what I like, how I like and not let CF stand in the way. 

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,800 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing. 

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