Family’s fight to save two-year-old daughter with complex and rare condition Alagille Syndrome

A Perth family is fighting to save their two-year-old daughter’s life after Australian doctors ran out of surgical options for her complex and rare condition.

Her only hope now lies in the United States, but it comes with an eye-watering bill.

Makaia is a toddler who is already larger than life but behind her big smile, the two-year-old’s heart is running out of options.

“I cry at night putting her to bed. Like how long do I have with you,” her mum Ellen Maughan said.

The two-year-old suffers from Alagille Syndrome which is an ultra-rare disorder affecting the heart, lungs, liver and bones.

“But what’s unique about her is the actual arteries from her heart to her lungs are basically still a newborn size,” Maughan said.

“At this point it’s so small it’s causing her heart to go into failure.”

Makaia was rushed to the emergency department at a week old and underwent surgery three days. She has spent more time in hospital than most adults ever will as a result of her condition.

But the complexity of Makaia’s condition is beyond the scope of Australia’s top specialists who have run out of answers.

But Makaia’s mum was desperate for options, and she found one nearly 20,000km away in Chicago.

“It’s the only hospital we’ve heard back from that they can potentially do something, and obviously that was it was the best feeling in the world,” Maughan said.

There’s no guarantee of success - not just the risk of major surgery but the burden of finding the cash.

Makaia’s family need to find $150,000 for specialists to assess the little girl while if they proceed with surgery, the bill will be more than 10 times that.

“I think it was more the reality hit me that I was like, this is this is a crazy amount of money to get together,” Maughan said.