How can you put a price on my little girl’s life?

LOUISE MOORE tells the harrowing story of her five-year-old daughter’s battle with cystic fibrosis and her fight to get access to a wonder drug that could extend her life by decades

WHEN the alarm goes at 5.30am every day I have to fight the instinct to hide under the duvet like a child and avoid beginning the mammoth treatment regime that lies ahead for our five-yearold daughter Charlotte.

My beautiful little girl doesn’t look sick. In fact she looks so well that anyone who doesn’t know her wouldn’t have a clue that she has cystic fibrosis (CF), the UK’s most common life-threatening inherited disease.

By 7am every day Charlotte will have undergone an hour of gruelling physiotherapy and received a cocktail of medications to help loosen the thick, sticky mucus that clogs her lungs and digestive system, making it difficult for her to breathe, exercise and digest food.

CF affects 10,400 people in the UK. Five babies are born with the condition every week and there is no cure, yet most understand very little about the disease.

It can happen to anyone carrying the gene and in the UK that’s one in every 25 people. As it is an auto-recessive gene, if you have a child with another carrier the chances of having a baby with CF drop to one in four.

Having CF is very isolating. While my daughter looks very normal, our family life is not. Being able to go on a play date, go swimming or even enjoying a spontaneous coffee with a friend falls somewhere behind the strict regimen of physiotherapy, nebuliser sessions, blood tests, liver scans, lung function tests, not to mention the worry of trying to hold it all together.

Charlotte was diagnosed with CF when she was three weeks old. The news knocked us sideways. Never to that day did I truly know or understand what