Wonthaggi is running to help children in need

When Wonthaggi’s Shontelle O’Connor lines up for her first-ever half-marathon next month, she’ll do so alongside hundreds of others who are all contributing to a very special cause.

The 23-year-old will tackle the 21.1km event at the inaugural Voyage Fitness Wonthaggi Run for Very Special Kids, raising money for children with life-limiting conditions and their families.

Earlier this year, she said running five kilometres felt like a stretch.

But now, after following a structured running plan and recently finishing two 18km runs and a 20km effort, she’s ready.

“I wanted to push myself to do something harder. Something I didn’t think I’d originally be able to do,” she said.

But the challenge wasn’t the only reason she decided to sign up.

“I probably wouldn’t be interested in going through the training for a half-marathon if I didn’t think it was for such a good cause,” she said.

“I like that it’s for a great purpose and the money’s going somewhere important.”

The money will help to support families such as Zoe and Ken Chung and their two-year-old daughter Sophia.

Sophia has Congenital Myasthenic Syndrome, an extremely rare neuromuscular condition affecting communication between her nerves and muscles.

It causes profound muscle weakness and affects her breathing, swallowing and movement.

She was diagnosed at just seven weeks old and spent almost her entire first year in hospital.

Then, when Sophia was four months old, Ms Chung was diagnosed with breast cancer.

The family was living out of suitcases at the children’s hospital, learning how to care for a baby with complex medical needs while Ms Chung underwent cancer treatment.

They were referred to Very Special Kids at the beginning of 2025, as Sophia was preparing to come home.

The organisation offered Sophia five weeks of respite care at its children’s hospice, Very Special Kids House, while Ms Chung recovered from chemotherapy and underwent a double mastectomy.

It meant Sophia could be cared for by a team of professionals who were familiar with her medical needs, while Mr Chung was able to move between supporting both his daughter and his wife.

And it gave Ms Chung time to recover.

During Sophia’s stay, Ms Chung received the news that she was in remission.

When the staff found out, they decorated Sophia’s room with balloons and cupcakes and organised a cancer-free celebration.

“It was such a lovely moment and really showed us that they cared about all of us, not just Sophia,” Ms Chung said.

Sophia has since returned to Very Special Kids House numerous times, where she has access to physiotherapy, occupational therapy, music therapy and the chance to play with other kids.

The respite has allowed her parents to attend weddings and important events and even take their first holiday together since Sophia was born.

“We’ve spent so much of the last two years being parents and carers, navigating hospitals and medical care, and trying to keep everything going,” Ms Chung said.

“Having respite gives us the chance to reconnect as a couple and just enjoy being together without the constant responsibility sitting between us.”

Sophia has a tracheostomy, uses a ventilator, is tube-fed and attends multiple therapy and hospital appointments.

But her complex medical treatment isn’t the only thing Very Special Kids House provides.

“She gets to play with other children, try new things, have fun and be celebrated for who she is,” Ms Chung said.

“When you have a child with a rare condition, it can sometimes feel like you’re living in a world that very few other people understand. Very Special Kids has given us somewhere we belong within that world.”

Very Special Kids CEO Michael Wasley said the organisation supported 29 families from the Gippsland region in the 2024-25 financial year, part of close to 800 families across Victoria as a whole.

He spoke about fundraising events like Voyage Fitness Wonthaggi’s upcoming Run for Very Special Kids, saying that as a predominantly self-funded charity, Very Special Kids relies heavily on community donations.

“Community generosity means Very Special Kids can continue delivering paediatric palliative care that brings comfort and joy to seriously ill kids, while helping families create lasting memories in the precious time they have together,” Mr Wasley said.

The Run for Very Special Kids will be held at Apex Park in Wonthaggi on Sunday, October 4, and organisers are aiming to raise $8000.

Along with the half-marathon, people can enter 10km and 5km runs, a 2km family walk or a 1km kids dash.

There will also be food trucks, face painting, a bubble display, a coffee cart and more.

Ms O’Connor encouraged anyone still on the fence to give it a go.

“It’s not a race. You’re only competing against yourself,” she said.

“Even if it’s not your best run, at least you know the outcome is that you helped a good cause.”

To register for the run, please click here.