On Friday 16 June, Hero for HeartKids is calling on Canberrans to embrace their inner superhero by dressing up to raise awareness and support families affected by congenital heart disease (CHD).

Local parents, Ryshell and Ryan, will be dressing up to show love for their hero, 20-month-old son, Salem.

Salem will also be donning his cape and Avengers onesie, simultaneously spreading joy and living up to his holiday namesake. “He is our October spooky boy,” smiles Ryshell, a self-proclaimed lover of all things Halloween.

But there is more than one meaning to Salem’s name. “It also means safe, peaceful,” says dad, Ryan.

“Before we knew Salem, we found out he had an anomaly at 18 weeks into the pregnancy. We didn’t know what the condition was at the time,” explains Rhysell.

“It was just a little mantra that we used when we spoke to him, ‘You are safe’.”

Salem was born with Ebstein anomaly, a rare congenital heart defect where his tricuspid valve is in the wrong position and the valve’s flaps are malformed.

This Friday, his family hopes to shine a light on CHD. “It’s the biggest cause of death for children under one in Australia,” says Ryshell. “And there is no cure.”

“It’s been a lot of late-night trips to the emergency department, not knowing if you have to be transferred from Canberra Hospital all the way to Westmead that night,” says Ryan on the challenges they have faced.

“Salem has had to be airlifted twice, once when he was only a few hours old,” says Ryshell. “It can be an isolating experience. We didn’t personally know of anyone else that had CHD.

“That was on top of all of that stress and excitement that comes with having your first baby.”

Just before his first birthday, Salem underwent heart surgery at The Children’s Hospital in Westmead.

“We were hoping that we would be home for his first birthday, after being robbed of a couple of firsts,” says Ryshell.

“Because we weren’t planning on being in hospital, we didn’t have any presents … We felt like we had messed this up.”

In their lowest moment, Ryshell and Ryan were showered with love from the nurses in the ward, as well as Heart Kids, who came to the rescue with birthday presents for Salem.

“It was such a meaningful moment for us because it just showed that other people care,” says Ryshell. “Heart Kids became our family. They were there for his first birthday, when our own family couldn’t be.”

The new parents have borne the brunt of the cost for interstate travel and taking time off for Salem’s treatment. As his heart condition isn’t classified as a disability, they aren’t eligible for most government assistance.

Still, Ryshell and Ryan are steadfast in their optimism.

“We very much live in the moment and take it as it comes … Salem is currently stable, which is a beautiful word,” says Ryshell.

“Hopefully, his current procedure can last us just a few more years. Then we’re hoping he will be able to have a cone repair, where they try to bring the right side of his heart to a normal physiology.

“The real superstar is Salem,” she smiles. “Our boy is incredibly resilient. He spent the first 12 months of his life requiring an oxygen and feeding tube.

“We waited 18 months before he started crawling. And honestly, since then, his development has just skyrocketed. He’s very determined to walk, and hopefully he will.

“He’s a little pocket rocket. He loves his music, he loves his pet cats, and smiling at everyone he meets.”

To be a hero for Heart Kids like Salem, visit hero4heartkids.org.au to register or donate.

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