“I wish we didn’t have to fight for extra support, when we’re already fighting to extend the lives of our children”: Melissa’s story

From the moment Thèadora was born we knew she was a fighter. At just a day old she had an operation at Alder Hey Hospital in Liverpool due to a complication caused by meconium ileus. This can be a sign of CF, but at that point we didn’t know the journey that would unfold.

A heel prick test confirmed her CF diagnosis along with a leaflet of what it meant. The leaflet was outdated and said the words ‘you can follow all medications and therapies and it still not lead to a long life’ – words that sadly stayed with us but that we are determined to prove wrong.

Over nine years later and Thèadora is now approaching her 10th birthday and has blossomed into an incredible girl. Boundaries we have placed in the past to help protect her, like sticking to strict regimes of therapies and nutrition, have given her the best start in life. Thèadora is also now taking Kaftrio with a supplement milkshake and is gaining weight and growing unlike ever before. Organisation, determination and living life to the full is what we strive for each day.

We try not to allow CF to burden us as a family, but realistically we have to have a contingency plan financially for unexpected hospital visits. Weeks prior to our family holiday, we had to visit our hospital three times a day while Thèadora was having intravenous antibiotics for a Pseudomonas aeruginosa infection. We travelled up from Wales to Alder Hey Hospital, paid the tolls each way, paid for petrol and stayed in a hotel for two nights, taking it in turns to see our daughter.

It’s an unexpected cost - around £370 overall - and something that we didn’t budget for. We would never not go and place our daughter’s health in jeopardy, but understand for many this cost will be too much and mean difficult choices must be made. Life is very delicate with CF - a little holiday for my daughter instead would have made a huge difference with the memories we could have made.

She is also now taking a nebulised therapy which has to be kept in the fridge and this also has an impact on our energy costs – especially with the recent increases in energy prices. I write this hoping that one day there will be extra support out there for the CF community to help with these additional costs, which would make such a difference. I wish we didn’t have to fight for this support, when each day we are already fighting to extend the lives of our children.

In the future, I want Thèadora to live a fulfilling life; a life unlimited by CF - and to have the support she deserves. 

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.

Melissa’s experience may bring up complicated emotions, and we would encourage those who need advice relating to topics raised within this story to contact our Helpline or get in touch with us on social media.

You can also find out more about the financial support we offer here.

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Read more about our Cost of CF report and what we’re calling for