Baldivis mum Danielle Green campaigning for mandatory genetic testing when young people die suddenly

Baldivis mother Danielle Green is campaigning to perform routine genetic tests on all young people when the causes of death are uncertain.

Ms. Green spoke last year to Sound Telegraph about the death of her children Sonny and Airlie, a rare genetic mutation called PPA2, which is defined in less than 100 people worldwide.

In 2021, Ms. Green and her husband Leon, Sonny suddenly died, when her first children died, she had the worst nightmare of every parent when she got old for nine months.

Ms. Green took Sonny to Rockingham Hospital for controlling, but only 30 minutes later entered the heart stop. He was transferred to Perth Children’s Hospital, but he died soon.

Coroner directed Sonny’s cause of death as unknown, and their daughters learned why until they were born in Airlie 2022.

At only five months old, Airlie began to have a familiar symptom set and then entered the heart stop.

The health personnel at the Rockingham Hospital managed to bring him back and transferred to Airlie PCH.

Doctors could not find anything structurally in the heart of Airlie, so a series of genetic tests were ordered.

These tests, which led to the diagnosis of PPA2 and the reason for the discovery of Sonny a year ago.

Airlie died in May 2024 after only 18 months of heart stopped.

If Sonny performed genetic tests, gene mutation would be taken, and the greenery would be warned for risk for future children.

“Unknown” is listed as the cause of death for approximately 40 percent of all people under 20 years of age, but approximately 27 percent of sudden cardiac deaths in young people contain genetic mutations.

Therefore, Ms. Green is now pioneering Coroner’s project with Rachael Casella.

Even thinking that your child was cut for autopsy could give this answer to a terrible and simple genetic test.

In 2017, Mrs. Casella’s daughter Mackenzie was diagnosed with spine muscle atrophy and died before her first birthday.

Mrs. Casella and her husband Jonathan started campaigning to make genetic carrier tests free of charge for all Australians, and in 2018, Mackenzie’s Mission Research Project was announced.

In WA, the genetic test is already used by the state coronary office, but only “if necessary”.

Other states and regions have their own rules in doing genetic tests, but it is not compulsory.

Ms. Green said that a large number of parents contacted her because she shared her story last year.

“Many of them couldn’t get an answer when their children died or still waited for answers, and then they learned that genetic tests were not always performed after reading our story.”

“Many people assume that genetic test is performed.”

In 2003, Ms. Green points to Kathleen Folbigg, who was misconceptive for killing four baby children, as an example in which genetic tests can prevent years of heart attacks.

“He just breaks my heart with him, because if my children had died at home, this could be easily me. I could potentially go down the same way, Mrs Mrsa Green said.

“As a parent, you sit there, question, you accuse yourself at any moment.

“And when the coronal police arrive, they make photos, explanations, they question you, and I don’t think they’re trying to make you feel like that, but automatically, ‘Oh my God, I’m a guilty’.

“They have to do their research, but the last thing you want to do is to make a statement or watch your child take photos for autopsy.”

Ms. Green said that the consent and genetic test cost was given as the reasons for not being presented routine after a sudden death.

“You know, they took their brains with both children and sent them to America, and I don’t understand why they were doing it, because we knew what happened,” he said.

“And then it was crazy to imagine the cost of it. And why, why? Even thinking that your child was cut for an autopsy could give this answer to a terrible and simple genetic test.”

The genetic test cost is estimated to be about $ 4000, but it decreases every year.

Last year, at that time, Health Minister Amber-Jade Sanderson said WA’s looking at the update of the maintenance model, but since then there has been no progress or announcement.

Mrs. Green and Mrs. Casella Chage.com Forced federal, state and regional governments to make changes in the coronial process.

The Coroners project is supported by various organizations, including Murdoch Children’s Research Institute, Red Nose Australia, Australian genomics and Mito Foundation.