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.
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“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 born with a rare congenital heart condition. Credit: GoFundMe
She has spent most of her life in hospital. Credit: GoFundMe
She need a life-saving miracle. Credit: GoFundMe
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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.
Two months ago, doctors advised palliative care for the little girl.
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.
The little girl needs care in the US. Credit: 7NEWS
Makaia and her baby brother. Credit: 7NEWS
Makaia’s mum Ellen Maughan. Credit: 7NEWS
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.
“Unfortunately there are conditions we just cant treat in Australia. So going to a specialised centre is very important,” specialist cardiologist Dr Michael Nguyen said.
Maughan is doing everything she can to get Makaia to the US, starting an online fundraiser in the hope of Australians helping raise money and their voice.
“Let’s get her to school, you know, let’s, let’s get everything she deserves. Let’s get her married one day,” Makaia’s aunt Caitlin Maughan said.
“Like I really hope she goes to school, we get to do those things with her… She obviously had a baby brother recently,” Maughan said.
“I just hope you get to grow up and know your sister … not somebody we have to show you photos of.”
