A couple say they are ‘heartbroken’ after losing a second child to PPA2, a rare genetic condition that mainly affects the heart and can cause sudden cardiac arrest.
West Australian couple Leon and Danielle Green’s 18-month-old daughter Airlie died four weeks ago, two years after the death of their nine-month-old son Sonny.
However, at the time of Sonny’s death, the couple, who live in Baldivis, 46 kilometers south of Perth, did not know what caused it.
It wasn’t until Airlie developed ventricular fibrillation – which causes a rapid, inadequate heartbeat – after five months that a geneticist realized what was wrong.
The discovery of the rare genetic mutation gave them an answer to what happened to Sonny and gave them hope for caring for their daughter.
‘She was a happy, healthy girl until she became ill and contracted multiple viruses. We were very positive about how her journey went,” Mr Green said Yahoo News.
Leon and Danielle Green’s 18-month-old daughter Airlie died three weeks ago, two years after the death of their nine-month-old son Sonny. The family is in the photo
Airlie’s condition was “quite complex” and required “a very strict emergency medical plan” for each time she was ill.
‘We started a support group online and discovered that countless other families around the world were going through a similar crisis. The group grew.
“We dedicated our lives to finding answers and how to best treat her when she wasn’t feeling well,” he said.
But earlier this month, Airlie suffered a severe case of gastrointestinal upset, which caused a heart attack, and her parents took her to a hospital.
The toddler was cleared and sent home 24 hours later.
However, two days later, on May 4, the Greens rushed Airlie back to hospital because she was vomiting so much.
“Then everything just went downhill,” Mr. Green said. “It was an extremely traumatic day and unfortunately we lost her.”
Airlie’s blood pressure dropped, causing her heart rate to increase and she went into cardiac arrest.
The Greens have been unable to return to work for ‘fear of facing everyone’.
“We’re broken… We have to go through all the hard things we have to do,” Mr. Green said.
His brother Patrick has launched one GoFundMe to help the couple ‘take time off to heal’ and to assist with funeral costs, with any additional funds donated to the Starlight and Heart Kids foundations.
Airlie (pictured) “was a happy, healthy girl until she got sick,” said her father, Leon Green
Mr Green said if they had known what caused Sonny’s death before Danielle became pregnant with Airlie, they would have instead considered using IVF, which can detect the gene early.
Having experienced the unimaginable pain of losing two children, the Greens want to educate people about PPA2 “and potentially help the next family who will have to deal with it.”
They would like to see standardized genetic testing for expectant parents in Australia, allowing ‘gene code errors’ to be detected at an earlier stage.
This could help prevent other families from experiencing what they have.