Cystic fibrosis killed my daughter, Tracie-Jayne, last February. She was 33. The hardest thing to come to terms with is that her life could have been saved if she’d had the double lung transplant she needed. Unfortunately, she was only on the waiting list for 12 months — patients usually have to wait two years before they are eligible. It was too late for Tracie.

We got the diagnosis when Tracie was two. The doctors told me the average life expectancy for a cystic fibrosis sufferer was 12. I had to go home to my beautiful little girl who seemed perfectly healthy knowing she would die before me.

We started her treatment immediately. It was hard work. We had to do physiotherapy twice a day, “clapping” her back to loosen the mucus on her lungs.

Tracie’s condition put huge strain on my marriage. I was her main carer my husband was away a lot so I had to bear the brunt of the awful hospital visits. We were also advised not to have any more children as we had a one in four chance of having another child with the condition.

Apart from the physio, Tracie lived a normal life. She did a lot of exercise to keep her lungs clear and was only in hospital when she was 6, 10 and 13. She worked until she was 23 when she was made redundant, by which time she had bought a house with her boyfriend, Steven. They got married in 2001.

Tracie’s condition got worse in 2004 and she spent the last 12 months of her life in and out of hospital. I never thought she would die, as I always believed she would get the transplant that would save her but her lungs just gave up. Steven, my husband, and I were with her when she died. I was hysterical for six months afterwards.

We are now on antidepressants to numb the pain. While I am so grateful she lived to celebrate her 18th, 21st and 30th birthdays and got married, she shouldn’t have died at only 33. She had so much more living to do.

Anita Sweetman was talking to Jessica Jonzen