Alexander Kakias is fighting for his life with a heart condition that affects just one in 400,000 children.
The one-year-old was born with cardiomyopathy barth syndrome – a rare heart condition that killed his brother Elias in 2018, at the age of eight months.
“Alexander’s smile is infectious and we know we will see it again at the end of his heart-wrenching journey,” his dad Nickolas Kakias told 7NEWS.
“Finding out that your child has the exact same condition that took the life of your eight-month-old just three years prior is something no parent wants to hear.
“There are no words to describe the feeling and the emotion we felt, knowing that Alexander would potentially endure the same horror and pain that Elias did.
“We count every moment with him as a blessing because we know how fragile his little life is.”
On August 26, 2019, baby Alexander was born with just a 1% chance of having the same genetic disease that lead to the death of Elias.
Cardiomyopathy barth syndrome is a rare condition characterised by an enlarged and weakened heart (dilated cardiomyopathy), weakness in muscles used for movement (skeletal myopathy), recurrent infections due to small numbers of white blood cells (neutropenia), and short stature.
“Alexander is like any other other smiley, chatty 20-month-old,” his dad added.
“He loves playing at home in the backyard with his big brother Romeo. They’re inseparable.
“Alexander looks like any other baby and when many people first meet him they don’t realise the battle for his life behind his gorgeous smile.”
At 16 months old, the little boy’s condition started to deteriorate.
To relieve the pressure on his heart, Alexander was placed in an induced coma and moved to a hospital in Melbourne.
“They had no other choice but to put him in a coma to relax his heart and to keep his temperature down,” his dad continued.
The toddler has been put on a waiting list for a heart transplant – but that could take up to a year.
“Essentially we need to keep Alex as stable and healthy as possible until we are blessed with a heart for him.”
His parents are now waiting to find out when the little boy will be given a Berlin heart – a device that mechanically supports the muscle in patients with end-stage heart failure.
“As parents, we stay hopeful that it all goes well but there’s always that thought in the back of our heads,” Nickolas concluded.
Two separate GoFundMe fundraisers have been set up for Alexander Kakias and his family:
We are all praying for you little angel.