Full of heart: Little Eli facing big hurdles
Eli Hagar is only seven months’ old – yet already he is facing the biggest hurdle of his life.
Eli has a rare heart disease and one day will need a transplant but, because he is an infant, it is particularly difficult to find a suitable organ donation.
Through her pregnancy and in the days after her son was born, Elise Hagar had no idea there was anything wrong with her little boy.
But, at just three weeks old, everything suddenly changed.
He was lethargic and off colour and Elise took him to hospital where his condition quickly deteriorated.
Eli was diagnosed with cardiomyopathy, where the heart muscle becomes inflamed and enlarged.
Because it is stretched, the muscle weakens and cannot pump blood as fast as it should.
If it becomes too weak, heart failure can occur.
Mum Elise said: “We've almost lost him a few times but he keeps bouncing back."
One in 500 Australians have cardiomyopathy.
However, Eli’s heart condition is part of a much broader, rare genetic disease called Barth syndrome. It occurs in about one in 400,000 live births. There is no cure and, one day, a heart transplant may be his only option.
Medication is keeping Eli alive but if he needs a new heart he could face a long and painful wait as there are more children with N stage heart failure than there are organs available.
Eli's mum wants every family to talk about organ donation and have a clear plan in place.
She added: "When it comes time, your organs could go on to help someone else, help several people."
And potentially save a life that is only just beginning.
