In November 2017 Dubbo’s Damien and Kellie Sallustio welcomed their baby boy Remi into the world.

While it should have been a time of blessing, little Remi had been diagnosed with a congenital heart condition while in the womb and just 7 days after his birth he passed away.

Now the family want to raise awareness for specialised charity Heart Kids, which focuses solely on childhood heart disease. 

A fundraiser is being led by Damien’s brother, Michael, on February 14, which is the charity’s annual fundraising day called Sweethearts Day.

The fundraiser will be held at Michael’s workplace Wyndham Vacation Resorts’ Coffs Harbour resort, Ramada.

The day aims to raise much-needed funds to provide vital medical research and support for kids, teens and adults affected by congenital/childhood heart disease across Australia.

Michael said it had been a “tough road” for Damien and Kellie.

“My brother and his wife found out at their 20-week scan that their son, Remi, was diagnosed with congenital heart disease,” Michael said.

“They didn’t know what the outcome was going to be until he was born. Remi was born on November 1, 2017, and he ended up passing away seven days later.

“They gave him every fighting chance.”

Michael said he was inspired to do something to help other families affected by congenital heart disease.

He said the fundraiser was about getting people to be more aware of congenital heart conditions in children as the disease is the leading cause of death of Australian babies.

“Eight babies are born with a heart condition in Australia every day,” Michael said.

“We want to raise awareness and let people know about it… we’re trying to raise funds for Heart Kids to put towards research.”

Michael said Damien and Kellie were “doing better” and “coping well.”

In October 2017 Michael set up a GoFundMe page to raise money for Damien and Kellie so they could be close to the doctors and medical assistance in Sydney when Remi was born.

“My brother and his wife live in Dubbo so they had to go to Sydney every second week between 20 and 37 weeks,” he said.

“They eventually moved to Sydney just before Remi was born at The Children’s Hospital at Westmead until he passed away on November 7.”

Michael said his brother Damien can’t believe the kindness people have shown over the past few months.

“It’s been good to know people are getting behind the cause and supporting,” he said.

If you would like to donate please visit Michael’s fundraising page at sweetheartday2018.everydayhero.com/au/wyndham-coffs-sweetheart-day-for-remi