Organ transplant the greatest gift of all

Beaming: Tilly Harley has become the bright, bubbly girl her illness had suppressed now that she's had her transplant. Pictures: Simon Bennett

Beaming: Tilly Harley has become the bright, bubbly girl her illness had suppressed now that she's had her transplant. Pictures: Simon Bennett

Matilda 'Tilly' Harley is a bright, bubbly, excitable six-year-old.

But if you'd met her this time last year, you would have found a very different little girl.

The Campbelltown child was suffering from a debilitating condition called biliary atresia, which severely affected her liver function.

Tilly experienced jaundice and an inescapable itchy feeling which left her covered, from head to toe, in painful scabs. She was lacking energy and was down and depressed.

But everything changed when the Harley family received the call they'd been waiting for - it was time to go to the hospital, there was a new liver waiting for Tilly.

Mum Kim Harley said there were "lots of emotions" the day her daughter went into hospital for her transplant.

"It was a rollercoaster," she said.

"We got the call at 11pm at night. My husband was asleep on the lounge. I just put my hand on him, and when he woke up he just knew, instinctively, what was happening.

"After we got to the hospital it hit us a bit more, and we were absolutely petrified about what was to come.

"There was an immense sadness, because we knew there was another family out there going through something so horrible, and although we were scared, we were excited and hopeful for the end of our little girl's suffering.

"We were very torn, and even felt guilty, that we were so excited about our daughter getting better at the expense of someone else's loss."

Mrs Harley said it was so vital to have conversations about your organ and tissue donation wishes, because you never know how your "gift" could help another family.

Grateful: The Harley family is beyond grateful to have received the irreplaceable gift of life.

Grateful: The Harley family is beyond grateful to have received the irreplaceable gift of life.

"I just want to say the biggest heartfelt thank you from our family," she said to Tilly's donor's family.

"It's not something you can really put into words, to give us our daughter back.

"It's beyond anything we could have ever imagined. It's the greatest gift you're able to give."

Mrs Harley said Tilly's physical symptoms cleared up almost immediately after the transplant, but the emotional and mental change took a little longer.

"That was a tougher journey," she said.

"She was really scared for a long time.

"But everything clicked once she was back at school with her friends.

"Now she's completely different - she has so much confidence and energy. You'd never know she'd been through something so big.

"She's very happy to talk about it and show off her scar."

Mrs Harley said the family had "caught a glimpse" of the joyful, exuberant Tilly of today back when she was about 18 months old, before her condition robbed her of her energy.

If people take one thing away from hearing Tilly's story, Mrs Harley hopes it's the desire to have that difficult conversation.

"The biggest thing is to talk to your loved ones and family, express your wishes and make sure they know," she said.

"They are the ones in the end who will make the final decision.

"Looking at Tilly, we are absolutely blessed she's still here, happy and health and that's because of someone donating. There are a lot of people out there in the same boat who are desperate to receive the same gift."

Visit donatelife.gov.au to learn more about organ and tissue donation and register.

This story Organ transplant the greatest gift of all first appeared on Campbelltown-Macarthur Advertiser.