A couple say they are “devastated” after losing a second child to PPA2, a rare genetic condition that mainly affects the heart and can cause sudden cardiac arrest.
Airlie, the 18-month-old daughter of Western Australian couple Leon and Danielle Green, 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 had caused it.
Only when Airlie suffered ventricular fibrillation, which causes a rapid and inadequate heartbeat, at five months old did a geneticist realize what was wrong.
The discovery of the rare genetic mutation gave them an answer about what happened to Sonny and hope for their daughter’s care.
‘She was a happy and healthy girl until she became ill and overcame multiple viruses. “We were very positive about how her trip was going,” 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 medical emergency plan” when she was ill.
‘We created an online support group and found many other families around the world who were going through a similar crisis. The group was growing.
“We just dedicated our lives to getting answers and how to best handle her when she wasn’t well,” he said.
But earlier this month, Airlie suffered a severe case of gastroenteritis that caused a cardiac episode and her parents took her to a hospital.
The boy was cleared and sent home 24 hours later.
However, two days later, on May 4, the Greens took Airlie back to the hospital because she was vomiting a lot.
“That’s when everything went downhill,” Mr. Green said. “It was an extremely traumatic day and we sadly lost her.”
Airlie’s blood pressure dropped, which raised her heart rate and she went into cardiac arrest.
The Greens have not been able to return to work for “fear of confronting everyone.”
“We’re devastated… We’re going through all the really difficult things we have to do,” Green said.
His brother Patrick has launched a GoFundMe to help give the couple “time off work to heal” and to help with funeral expenses, with additional funds being donated to the Starlight and Heart Kids foundations.
Airlie (pictured) “was a happy, healthy girl until she got sick,” said her father, Leon Green.
Green said if they had known what caused Sonny’s death before Danielle became pregnant with Airlie, they would have considered using IVF, which can detect the gene early.
Having gone through the unimaginable pain of losing two children, the Greens want to educate people about PPA2 “and potentially help the next family who has to deal with it.”
They would like to see standardized genetic testing for prospective parents in Australia, which could help detect “errors in the genetic code” at an earlier stage.
This could help save other families from going through what they have.
