Archer and Nikki Irwin: life waiting for an organ donation transplant
Nikki Irwin doesn't want to share her heartbreak with the world.
But she needs you to see her pain and to know how horrible life on the organ transplant list is for her son Archer, 7.
Last month, after 11 months on the waiting list, a doctor told her a potential match had died but their family opted not to donate the organs.
It was a tenuous match, they hadn't gone through the viability processes and even if the family had consented it could have fallen through.
But Archer is getting sicker, Ms Irwin said, and it was something.
STRENGTH: Nikki Irwin and Archer, 7, ahead of the Hume City2City where they participated to thank Albury Wodonga Health. Inset: Archer in Hospital.
Something that could have been nothing, or could have saved his life.
She'll never know.
"It's completely heartbreaking to hear we were potentially so close to having Archer out of this trauma," she said.
"It was like being handed something and have it taken away before we even knew."
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After seven years of hospital rooms and pain it's becoming increasingly hard for Ms Irwin and Archer to keep their cheeky smiles.
"I always try to find the positive in things but it's getting extremely hard, I just say it obviously wasn't the right [liver] for him," she said.
Every hospital visit, every treatment, every access of his port, is getting harder.
Ms Irwin said recently a nurse who works day-in and day-out alongside sick children said she wanted to cry seeing Archer's pain.
"Every time we go in it's just another layer of trauma for him," Ms Irwin said.
"Recently [during a procedure] he was screaming, it was really distressing.
"I've never done it in front of him before, I always go to the shower, but I just cried.
"It's so traumatic, he's just over it and I don't blame him.
"He's such a strong kid and to see him so broken...it's horrible."
Ms Irwin said it's important people see and hear the reality of life with a sick child and life on the organ transplant waiting list.
She hopes it will inspire them to sign up to be organ donors and have that tough conversation with their families - for Archer, and the thousands like him, who are waiting for a chance to live.
"It's the only way to get people to understand what he goes through," Ms Irwin said.
Tonight, Nikki is hosting a screening of Dying to Live - a documentary following six families through the transplant process - at Regent Cinemas to raise awareness of the desperate need for organ donors.
"For people like Arch... they go through literal hell get to a transplant," she said.
"A lot people don’t make it and there's no quality of life [waiting] because you spend your time in hospital or at home because you can’t actively be out in community."
Tickets to the film can be found through the Archer's Alpha Angels Facebook page.
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