Tina Lightfoot, 36, is married to David, 46, and they have two children — Jasmine, 15, and Charlotte, 13, who has cystic fibrosis. Here she explains what it is like to bring up her daughter

It wasn’t until Charlotte was six months old that we knew she had cystic fibrosis. We spent her first six months in and out of Guy’s Hospital, London, because of her poor weight gain. She was almost too pale to look at — a bag of bones with a piece of skin stretched over it. She was having her feeds as normal but wasting away under our eyes because of the pancreas’s inability to absorb fat, and she was having real problems breathing. It’s strange what sticks out in your memory; what I remember most was that she tasted very salty — another classic sign.

In the end she was too weak to stay at home. At hospital she was put in an oxygen bubble and wired up to a drip and, after a DNA test and a sweat test, David and I were called in to the consultant’s room. A box of tissues was put in front of us and we were told that Charlotte was terminally ill — which is the wrong way of telling a parent that their child suffers from cystic fibrosis and would never happen now.

Some sufferers do die when they are in their teens, but others live into their fifties, and to be told that your child would probably be in the former group is neither helpful nor necessarily true.

It was explained that cystic fibrosis was a genetic disorder and that there was a one in four chance of a baby inheriting the disease. My instant reaction was the realisation that Jasmine, 2 at the time, might also be a sufferer. Tests confirmed that she was not. After that, I needed to be alone with my husband and to understand what it was that my daughter had to live with and how we could help her to do so, before we told anybody else.

She was moved to a special unit in Lewisham, where she lived in a glass cubicle for a month to avoid catching any infections, and then she came home.

It was during that month that we were initiated to the incessant routine of drugs, equipment and health checks that would become part of all of our lives. The routine has remained pretty much the same throughout her 13 years so far.

When she was a baby, we needed to give her pancreatic enzymes in powder form, which absorb fat and act as a pancreas. As she grew older she moved on to the capsule form and needs to have eight or so before each meal, and to take the same amount as snacks between meals.

The first five years were the hardest because you don’t know what you are doing, what to expect, and what is normal. A cystic fibrosis nursing team visit us from Torbay (we moved from London to Devon when Charlotte was a baby) once a month to do spiromatory, which is when they weigh her, measure the air in her lungs and take cough swabs to check for bugs. Every two months we visit a specialist in Exeter for more detailed reviews.

Charlotte also has to take continuous antibiotics via a nebuliser twice a day, which used to take half an hour each time until very recently. Now a new machine has been invented that can do it in five minutes. The nebuliser opens up the airwaves running to and from the lungs so that the antibiotic can be absorbed as quickly as possible.

She also sleeps with a tube called a port-a-cath, which links up to her stomach and feeds her with vital nutrients and fat overnight, and she has something called a canulas port which sits under the skin on her chest and ensures that should she need extra feeds or antibiotics, her bloodstream can be accessed quickly. My husband and I have been trained to do this also, which took a while, but we think we have cracked it.

At first you panic and think every onset is final. Évery time Charlotte showed signs of having a cough, or stopped eating, we took her to hospital. The fear is that if a minor bug gets hold of her, she will catch pneumonia, or her organs will fail from overload, and she will die. But as she has got older, and as soon as she could communicate, it became easier, and on the whole we seem to take it in our stride these days – helped of course by our daughter’s indomitable spirit.