She is one of around 550 people in Ireland awaiting lifesaving heart, lung, liver, kidney, and pancreas transplants.
Lexi, from Dunhill, Co Waterford, needs a combined liver and kidney transplant and her health is deteriorating.
She has been on a transplant waiting list since December but has been suspended from it six times because she became extremely ill and had to be hospitalised.
Her mother, Kim Murphy, who is originally from Cork, said Lexi was diagnosed with her life threatening condition when she was only three weeks old.
Lexi suffers from a kidney disease that also affects her liver. One kidney was removed last September.
“It was thought her condition might not progress until her teens but it developed rapidly in the past two years,” said Kim.
If a suitable deceased donor becomes available, Lexi will travel to Birmingham in England for the transplant operation because it is not performed on children in Ireland.
Every two months, Kim and husband Declan travel with Lexi to Birmingham Children’s Hospital, where her condition is monitored. In between the Birmingham trips, Lexi attends Our Lady’s Children’s Hospital in Crumlin.
Kim and Declan decided long ago not to wrap Lexi in cotton wool so she could lead as normal a childhood as possible.
“When she is feeling well enough she attends school and enjoys ballet classes, Irish dancing, and Beavers. Just last week I brought her to see her favourite group, Little Mix, at the 3 Arena in Dublin,” said Kim.
“In the blink of an eye Lexi can become really sick but she just gets on with it and hardly ever complains, even when she receives her nightly injections.”
In the past two years, Lexi’s stays in hospital have been more frequent and longer.
Kim’s parents, Mary and Denis O’Sullivan, moved from their home in Cork last August to help out.
They mind Lexi’s older brother, Dylan, and baby sister, Ali, when Kim and Declan have to take her to hospital.
Kim said: “We feel we are luckier than other parents in our position because our extended family, friends, neighbours, and Lexi’s school have been so supportive.”
She decided to speak out about her daughter during Organ Donor Week to show how reliant they are on a family at a time of huge grief making a selfless decision to donate organs.
Meanwhile, Roscommon goalkeeper Phelim O’Neill, who underwent kidney transplant on his 22nd birthday 20 years ago, could not have known his gift of life would bring him and his future wife together.
“When making my regular visits to Cooney’s Pharmacy in Athlone to collect my transplant anti-rejection drugs I struck up a relationship with pharmacy technician, Tracy McManus. She became my wife two years ago,” said Phelim.
Organ Donor Awareness Week is organised by the Irish Kidney Association.