WA family’s fight to save two-year-old Aurelia, diagnosed with rare heart and lung condition

11 hours ago 7

A West Australian family has put out a desperate plea for help to save their two-year-old daughter Aurelia who has been diagnosed with pulmonary hypertension – a rare and life-threatening condition.

Aurelia has been getting treatment at Perth Children’s Hospital, which recently referred her to end-of-life palliative care, but her family are determined to do everything possible to get her further help.

Aurelia with her cousins at the Perth Children’s Hospital.

They will begin a trial medication called Selexipag – hoping it will slow down the progression of the condition while they wait on referrals for heart-lung transplant lists overseas.

Her aunty, Therese Butcher, has organised a GoFundMe to get her niece to one of three hospitals – two in the US and one in the UK – where specialists are “pushing the boundaries”.

Butcher said it was not possible to get transplants for children under the age of four in Australia, or under 15 kilograms due to the low survival rates, but believes there should be an exception in cases like Aurelia.

She said from research online and speaking with other families who have been in similar situations, it could cost up to $3 million to travel overseas with a medical team, get the treatment and then return home.

“Given time is not on our side and she is in such a critical condition, we have started crowdfunding now in the hope we can get her in to one of these hospitals overseas,” Butcher said.

Aurelia’s condition has rapidly worsened over the past few months. Butcher said she was rushed to hospital in September with her pulmonary arterial pressure sitting at 40 mmHg – it is meant to be in the 20s.

Now, that pressure is in the 70s.

“She is a beautiful, happy little baby. She loves Bluey and Miss Rachel and she is the happiest when she is with her family,” Butcher said.

“She’s obsessed with her cousins, so my children, and loves giving them cuddles.”

Butcher said she had lost her son to the same condition Aurelia was now living with at just 13 weeks old. The family had testing done and the condition is not genetic.

“When Aurelia got diagnosed I was so hopeful because she was older than my son was, but the treatment options are still limited,” she said.

“We are deeply grateful to the staff at PCH and over at Melbourne Children’s Hospital who have helped us out, but now we need to push the boat and do everything in our power to get further care.”

Aurelia’s father, Peter, wrote on the GoFundMe page that he “won’t give up”.

“I will fight for her with everything I have. If there is even one more door we can knock on, I will find it. I just need help to do it,” he said.

Butcher said they would “move heaven and earth”.

“We are just an average family who would do anything to save their little girl,” she said.

“She deserves to live a happy, healthy life.”

The family has also called for any advocates, or anyone who can help them, to reach out.

To date, the GoFundMe page has raised $11,000.

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