A mother whose six-year-old daughter is awaiting a double transplant says one of the most difficult aspects is that, to help Lexi, another family must make the decision to donate in a time of grief.
Kim Murphy, mum to Lexi, said: "One of the most difficult things for myself and my husband to come to terms with is that we are entirely reliant on a family somewhere to make the selfless decision to donate organs at a time of huge grief.
"But out of this grief they will give life back to Lexi and other children like her who are waiting for life saving organ transplants."
Lexi was first diagnosed with her life-threatening condition when she was only three weeks old. It was thought that her condition might not progress until her teens, but it developed rapidly in the past two years.
Lexi has been on the liver and kidney transplant waiting list since December 1, 2015 but has been suspended from it on six occasions since then, when she became extremely ill and had to be hospitalised.
"Myself and Declan made a decision a long time ago not to wrap her in cotton wool so that she could lead as normal a childhood as possible," said Kim.
"When she is feeling well enough she attends school, and enjoys ballet classes, Irish dancing and Beavers also. Just last week I brought her to see her favourite group, Little Mix, at the 3 Arena."
She said Lexi can become really ill "in the blink of an eye", but "just gets on with it and hardly ever complains even when she receives her nightly injections".
Kim's parents Mary and Denis O’Sullivan moved from the family home in Cork City in August to live in Dunhill, Waterford so that, if Kim and Declan had to bring Lexi to hospital, they could step in to mind Lexi’s older brother Dylan (10) and baby sister Ali (18 months).
Kim encouraged everyone to become a donor, saying that downloading the donor e-card to a phone only takes a couple minutes and sends a message to a next-of-kin which will prompt "that important family discussion about their decision to be an organ donor".
There are approximately 550 people in Ireland awaiting lifesaving heart, lung, liver, kidney and pancreas transplants.
Organ Donor Cards can also be obtained by phoning the Irish Kidney Association LoCall 1890 543639 or Freetext the word DONOR to 50050.
Organ Donor Awareness Week 2016 (April 2-9) is organised by the Irish Kidney Association.