Ellie – heart recipient, NSW

“…we came to know many other families in the cardiac ward. Some of these children didn’t make it – it was soul destroying,

Changing Ellie’s nappy for the first time without her being hooked up to monitors, the first time she was able to touch her toes, her first small family picnic outside hospital grounds…these are the things that will stick with young Ellie’s family forever as big milestones.

Ellie’s life was saved by an organ donor when she was just shy of 15 months old. The toddler had spent a large chunk of her life in hospital where her future was touch and go.

By the time Ellie was six weeks old she was living in the ICU at Westmead Children’s Hospital on a ventilator on life support. Diagnosed with a form of cardiomyopathy, she was in severe heart failure.

“We lived in fear that she wouldn’t make it to transplant,” Ellie’s dad Andrew said. Eventually Ellie deteriorated to the point of needing to be placed on a Ventricular Assist Device to help pump the blood around her body.

Ellie was on the device for seven long months. “During this time, we came to know many other families in the cardiac ward. Some of these children didn’t make it – it was soul destroying,” Andrew said.

Ellie’s life-saving organ donation finally made it to her, following a mammoth 16-hour surgery and four critical days, she was slowly taken off bypass and Ellie had been saved.

Now the healthy and happy Ellie has a real zest for life.

“She loves exploring outside, she has absolutely no fear,” Andrew said. “She is our cheeky, funny, intelligent little nugget and we are just savouring every moment.

“We have such gratitude for our donor family, and that will never go away. Every time Ellie reaches a milestone, we are reminded of the family who won’t get to experience their child’s moments. Without their generosity we wouldn’t have Ellie.”