News

Infant battles rare heart defect

BATTLER: Eli Hagar has spent most of his short life in hospital and even when he is at home is fed with a tube and can’t be taken out much in case he gets sick.
BATTLER: Eli Hagar has spent most of his short life in hospital and even when he is at home is fed with a tube and can’t be taken out much in case he gets sick.

ON THE outside, seven-month-old Eli Hagar looks just like any other bubbly little boy his age, but his future could depend on the decision of a person he will never meet.

Now his parents are on a mission to raise awareness about his condition and the importance of organ donation.

Elissa and her husband Rodney Hagar both grew up in the Clarence Valley, and moved to Sydney for work about eight years ago.

When their first child entered the world in February, the couple were thrilled.

He was the picture of health when he arrived, but at three weeks he was rushed to hospital in a critical condition.

Doctors soon diagnosed him with cardiomyopathy, which causes the heart muscle to become enlarged, thick, or rigid.

Eli's specific type of cardiomyopathy is called Barth syndrome, which affects fewer than 200 people in the world. He is one of four boys in Australia with the condition, and tragically there is no cure.

Now aged seven months, Eli is fed with a tube at home and receives daily medication to manage his condition.

His weak immune system means the family is usually housebound as they cannot risk falling ill.

"It's a hard because we'd love to be sociable and be normal parents and have Eli interact with other babies, but when he gets sick, he gets really sick," Mrs Hagar said.

"The smallest little thing can set him off, he's really brave and so strong and just keeps pulling through."

While doctors have said there is a chance his condition could improve with medication, Mr and Mrs Hagar are facing the prospect that little Eli will likely need a heart transplant to have a chance at a normal life.

"We try and stay positive and pray that he gets bigger and stronger every day, but it's always there in the back of our minds," Mrs Hagar said.

"We just hope that if we do need to go down that track there will be a heart waiting for us."

Eli's not on the donor list at the moment, but the couple is aware there are very few donors in Australia.

They are hoping to raise awareness of the disease and encourage more people to have a conversation about organ donation, so their son and others can have a fighting chance at life.

"The donor register doesn't matter; at the end of the day the family has to make the call, so have the conversation with those who matter so they know what you want to do," Mrs Hagar said.

"It can save so many lives."

Topics:  clarence valley bmx, editors picks, health, sydney, transplant




Stay Connected

Update your news preferences and get the latest news delivered to your inbox.

3 easy dinner recipes your kids will love, and so will you

No Caption

THERE is a middle ground! Dinners fit for kids and adults.

How to reduce your child's risk of food allergies

ABOUT 90% of food allergies are caused by just seven foods.

5 good mental health habits for kids (and parents)

CRYING OUT FOR HELP: The demand for counselling support for children and young people is increasing.

FORMING good habits early is critical for your child's mental health.

Smack or no smack - where do you stand?

THE debate is reignited - is smacking acceptable?

Susie O'Neill: Why I stopped smacking my children

Swimming legend Susie O'Neill says she has stopped smacking her kids.

“I (smacked) because that’s what I knew growing up."

Introducing a step-parent into the family

Introducing a step-parent into the family can be stressful for the children, as well as the new parent.

THERE is no easy way to introduce a step parent into the family.

Motorcylist killed in crash on the Northern Rivers

The man, who was in his mid-40s, died at the scene.

SPIRITUAL MATTERS: In need of the Godly truth

Flowers are a gift that can definitely lighten the mood

“WHAT the imagination seizes as beauty must be truth.” (Keats)

Stevens stumps doctors with early return from injury

STUMPED: South Grafton Rebels’ captain courageous Grant Stevens is expected to make an early return from a shoulder and sternum injury this Sunday.

Skipper back in red and white afterr shoulder injury

Latest deals and offers

Ulmarra Public School celebrates 125 years

CELEBRATION: Isabella Watts, Sophie Watts, Jean Kratz and Emily Watts cutting the cake at Ulmarra Public School's 125th birthday celebrations on Friday, June 24.

Ulmarra Public School celebrates 125 years

Justice Lucy McCallum

Justice Lucy McCallum

Justice Lucy McCallum says she reduced Oliver Curtis's sentence due to comments...

Perisher has 50cm of snow

Resort to open after 50cm of snow.

Smiggin Holes and Blue Cow to open after 50cm of snaow falls in Perisher valley.

Commercial Property June 16 edition

SNAPPED UP: A sushi shop in a106sq mground-floor tenancy with a 43sq moutdoor area in Southport Central Towers on the Gold Coast has sold for $954,000.

RealCommercial edition June 16, 2016.

Iconic North Coast hotel could sell for $80 million

ON THE MARKET: The Beach Hotel, Byron Bay.

Million-dollar views, good income, beer - what more could you want?