In November 2003, Gary Torrance joined the waiting list for a double lung transplant. Sadly 14 months later, at the age of 23 years, his time ran out. Here his family tell their story...

Living with someone who has Cystic Fibrosis (CF) brings joy and pain. A CF child is a very special child and the things they do and achieve, despite their illness, are very special things. It is a different life and one which dictates your daily routine as a family, especially as the condition progresses and your loved one depends on you more and more each day to help them to get around, to carry out simple tasks, which to them are exhausting.

When the subject of transplant assessment was first mentioned, you realise how bad things have become and you are fearful because you know that there are never enough donor organs and that demand outstrips the number of available organs for transplant

What is it like to live with someone on the transplant list? You live in the hope every pager message or telephone call could be the Transplant Co-ordinator informing you of a possible donor organ. You live with a holdall packed with clothes to take to hospital for the operation. You live in hope that the transplant will happen. You live with the anxiety that your loved one will not be well enough to undergo the operation. You live with the anxiety around the risks that the operation itself will bring. You live with the anxiety that the call will not come in time. You live in the knowledge that there is nothing at all that you can do to change what is happening to your family.

For us the call did not come in time. There were simply too few organ donations. Initial feelings of acute distress are followed by anger and frustration that it was your loved one that never got that life changing transplant, your loved one who would never live out their dreams and go on to achieve even more in their life. Losing a much loved family member whilst awaiting a transplant leaves an immense void and a feeling that it might have been so different, had there been more donors.

Donor cards are one thing but donations are another. We need to tell our families that we want our organs to be donated in the event of our death. We must support initiatives like 'Live Life Then Give Life', which will encourage more organ donors to come forward. Don't let another family face the disappointment and sadness because the transplant didn't come quickly enough for them.