{"id":73516,"date":"2026-08-17T03:26:39","date_gmt":"2026-08-17T03:26:39","guid":{"rendered":"https:\/\/www.europesays.com\/australia\/73516\/"},"modified":"2026-08-17T03:26:39","modified_gmt":"2026-08-17T03:26:39","slug":"familys-fight-to-save-two-year-old-daughter-with-complex-and-rare-condition-alagille-syndrome","status":"publish","type":"post","link":"https:\/\/www.europesays.com\/australia\/73516\/","title":{"rendered":"Family\u2019s fight to save two-year-old daughter with complex and rare condition Alagille Syndrome"},"content":{"rendered":"

A Perth<\/a> family is fighting to save their two-year-old daughter\u2019s life after Australian doctors ran out of surgical options for her complex and rare condition.<\/p>\n

Her only hope now lies in the United States, but it comes with an eye-watering bill.\u00a0<\/p>\n

Makaia is a toddler who is already larger than life but behind her big smile, the two-year-old\u2019s heart is running out of options.<\/p>\n

Know the news with the 7NEWS app: Download today Arrow<\/a><\/p>\n

\u201cI cry at night putting her to bed. Like how long do I have with you,\u201d her mum Ellen Maughan said.<\/p>\n

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

\u201cBut what\u2019s unique about her is the actual arteries from her heart to her lungs are basically still a newborn size,\u201d Maughan said.<\/p>\n

\u201cAt this point it\u2019s so small it\u2019s causing her heart to go into failure.\u201d<\/p>\n

\"MakaiaMakaia was born with a rare congenital heart condition. Credit: GoFundMe\"SheShe has spent most of her life in hospital. Credit: GoFundMe\"SheShe need a life-saving miracle. Credit: GoFundMe<\/p>\n

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.<\/p>\n

But the complexity of Makaia\u2019s condition is beyond the scope of Australia\u2019s top specialists who have run out of answers.<\/p>\n

Two months ago, doctors advised palliative care for the little girl.<\/p>\n

But Makaia\u2019s mum was desperate for options, and she found one nearly 20,000km away in Chicago.<\/p>\n

\u201cIt\u2019s the only hospital we\u2019ve heard back from that they can potentially do something, and obviously that was it was the best feeling in the world,\u201d Maughan said.<\/p>\n

There\u2019s no guarantee of success – not just the risk of major surgery but the burden of finding the cash.<\/p>\n

\"TheThe little girl needs care in the US. Credit: 7NEWS\"MakaiaMakaia and her baby brother. Credit: 7NEWS\"Makaia\u2019sMakaia\u2019s mum Ellen Maughan. Credit: 7NEWS<\/p>\n

Makaia\u2019s 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.<\/p>\n

\u201cI think it was more the reality hit me that I was like, this is this is a crazy amount of money to get together,\u201d Maughan said.<\/p>\n

\u201cUnfortunately there are conditions we just cant treat in Australia. So going to a specialised centre is very important,\u201d specialist cardiologist Dr Michael Nguyen said.<\/p>\n

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.<\/a><\/p>\n

\u201cLet\u2019s get her to school, you know, let\u2019s, let\u2019s get everything she deserves. Let\u2019s get her married one day,\u201d Makaia\u2019s aunt Caitlin Maughan said.<\/p>\n

\u201cLike I really hope she goes to school, we get to do those things with her… She obviously had a baby brother recently,\u201d Maughan said.<\/p>\n

\u201cI just hope you get to grow up and know your sister … not somebody\u00a0we have to show you photos of.\u201d<\/p>\n

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