After defying the odds, Forest Lebrocq needs more surgery for his rare heart condition. Picture: Romy Bullerjahn
After defying the odds, Forest Lebrocq needs more surgery for his rare heart condition. Picture: Romy Bullerjahn

Toddler battles deadly rare disease mistaken for a cold

Little Forest Lebrocq is in the fight of his life.

After being diagnosed with a rare disease his parents thought was a common cold, the plucky two-year-old from Kuranda, in Far North Queensland, is facing a delicate operation doctors fear he may not survive.

But Forest has proved them wrong before, beating slim odds after emergency heart surgery in Brisbane in July.

"We've been told he is the only case like it in Australia, and medically speaking, he shouldn't be here, but he's a battler," father Shane Lebrocq, 44, said.

Forest Lebrocq, 2, has a rare and potentially fatal heart condition originally mistaken for a common cold. His father Shane Lebrocq says he’s a battler. Picture: Romy Bullerjahn
Forest Lebrocq, 2, has a rare and potentially fatal heart condition originally mistaken for a common cold. His father Shane Lebrocq says he’s a battler. Picture: Romy Bullerjahn

Forest has pulmonary vein stenosis, where veins to the heart narrow or become blocked.

The potentially fatal condition was diagnosed in June after Forest endured repeated hospitalisations for colds, a regular complication of the disease which otherwise can show no symptoms until it is very advanced.

"He was always getting a runny nose, and just overnight would go downhill and end up in the ICU," Mr Lebrocq said.

 

Forest Lebrocq with his mum and dad in hospital.
Forest Lebrocq with his mum and dad in hospital.

 

"By the time he was diagnosed, three of the four veins carrying oxygen to the heart from the lungs had failed and shrivelled.

"Doctors at the (Queensland) Children's Hospital operated on his last vein, to widen it, but told us he mightn't make it through the night.

"Well he did, and it was the first time in months we'd seen real colour in his face."

Forest Lebrocq defying the odds after delicate heart surgery. Photo: Supplied
Forest Lebrocq defying the odds after delicate heart surgery. Photo: Supplied

Forest's mother Fay Barton urged other parents to get their children checked for the usually congenital disease, which can also be characterised by fast breathing and fatigue.

"Don't be afraid, you know your child, so if something's not right, keep seeking answers," Ms Barton, 32, said.

She said her son had become a favourite with hospital staff.

"Everyone he meets, he touches them.

"After his surgery he rubbed his chest and said to the surgeon, 'thank you, doctor, I feel better, can I have a kissy now'?

"And the nurses all want to take him home with them, he's such a dear little boy."

Forest Lebrocq with mum Fay Barton, dad Shane Lebrocq and sister Raign Lebrocq, 20 months. Picture: Romy Bullerjahn.
Forest Lebrocq with mum Fay Barton, dad Shane Lebrocq and sister Raign Lebrocq, 20 months. Picture: Romy Bullerjahn.

The couple, who run a gardening and cleaning business after ditching careers in hospitality, have spent tens of thousands of dollars on Forest's treatment.

"We've done our best to suck it up," Mr Lebrocq said, "but we just don't know what's ahead."

In recent weeks, Forest's condition has flared again and on Monday the pair, also parents to 20-month-old daughter Raign who is "in perfect health", will learn if more high-risk surgery is recommended.

They have started a GoFundMe page to assist with ongoing costs.

Originally published as Toddler battles deadly rare disease mistaken for a cold


Ultimate guide to the state election

Ultimate guide to the state election

QLD election 2020: Ultimate guide to party policies and promises

Three FNQ men arrested over nationwide paedophile ring

Premium Content Three FNQ men arrested over nationwide paedophile ring

THREE Far North Queensland men have been charged as part of a nationwide operation...

MP’s promise to increase Chinchilla to Dalby Warrego speed

Premium Content MP’s promise to increase Chinchilla to Dalby Warrego speed

THE LNP has made an election promise to increase the Warrego Highway speed to...