Madeline was born with genetic liver disease.
But what if we told you we could stop this from happening to children?
It’s no longer a question of how, but when, because the only thing stopping us is funding.
Madeline’s story illustrates how traumatic genetic disease can be for affected children and their families. Four days after Madeline was born, her mum Eva rushed her back to hospital. There were literally only hours to save her life.
“Something wasn’t right. I knew that. Madeline had gone 12 hours without food, when she should have been eating every two to three hours. She was lethargic and floppy, struggling to breathe. Her breath was coming in gasps.
“Everything was happening at once, and then I heard the new doctor mention the word ammonia… Madeline’s level was 600, and it should have been around 50. She was ordered into immediate dialysis, so her blood could be filtered.”
Madeline went through 11 months of intense treatment for the urea cycle defect that was causing her liver to fail, until …
“The doctors said something to us from left field – a liver transplant.
“My husband Charlie had tests done to see if he could be a liver donor. He could…Soon after we got a phone-call saying a donor liver had become available. What do I say to those people whose greatest loss is our greatest gift?”
“Looking back, I don’t want anyone else to suffer the way we suffered… There were days I fell apart, but only for an instant, because my family needed me. When it’s your family, you fight for it with your life.”The transplant was a success, but brings its own management challenges.
Story told by Eva, Madeline’s mum.