Alexander Kakias gets heart transplant for rare condition which claimed his brother’s life

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At just 18 months of age, Alexander Kakias’ heart had given up and he relied on a Berlin Heart to keep him alive. This machine is a contraption that sits outside the body to pump blood when the heart can no longer do it.

Alex needed this machine as he suffered from Barth Syndrome, a rare condition characterised by an enlarged and weakened heart called dilated cardiomyopathy.

His brother, Elias, also had the condition and passed away at the age of nine months when a clot formed in his Berlin Heart after five weeks on the heart transplant list.

That’s why Alex’s parents, Elizabeth and Nickolas Kakias, feared the worst as Alex was also forced to wait for a transplant.

Alexander with his dad Nickolas, mum Elizabeth and brother Romeo at home. Picture: Sam Ruttyn.

“I could never imagine bringing him home. I thought it would be the same road as Elias where I didn’t get to bring him home,” Elizabeth told The Daily Telegraph.

The Peakhurst family had to uproot from Sydney in June to go to the Royal Children‘s Hospital in Melbourne, the only place in Australia where heart transplants are conducted.

Time and time again Alex got sick or needed more surgery. The months ticked on until the call came that a donor heart was a match for Alex.

“He went in at 10.30am and got out at 8pm. We got the phone call it went really well, he didn’t skip a beat and it went smoothly,” Elizabeth told the newspaper.

The day after Alex’s heart transplant.

“Everyone was so happy but I knew what the other mother was going through, so how could I be happy?

“I was happy for my child but very sad for her because she was going to bed without a child and I know exactly how she felt…”

The change in Alex was remarkable. He was out of ICU in five days and, on the ward, wanted to get back to the business of becoming a toddler after being bedridden for almost five months.

“It was a quick turnaround, he was amazing. Every check they have done has shown the heart is good…” Elizabeth said.

“Alex will grow up and I will remind him how lucky he is. He got the gift of life.”

Source: The Daily Telegraph.

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