'We didn't want anyone to feel sad when he was born'

Julie Fisher is devoted to her son Darcy. In fact she's been devoted to her boy since before he was born.

Darcy, now 14, was diagnosed with Down's syndrome in utero during a pregnancy ultrasound.

"They kept measuring the thickness of his neck," she tells 9Honey. "We got a second opinion and then had the second scan and the 'amnio' test at 15 weeks to confirm it."

While Julie and her husband Mick were expecting the news, she says it still came as a "shock".

"There was still that shock element when the doctor said it over the phone, when we first heard it come out of someone's mouth," she says.

Once they had processed the news, they chose to tell family and friends.

"We didn't want people to be sad when he was born," she says.

When Darcy was born he was perfect and his family were delighted.

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By the time he was four month's old, however, he started aspirating fluid into his lungs which led to a series of life-threatening infections.

"He started on solids so he could tolerate those but for liquids he had an PEG [feeding tube] inserted into his stomach," she says.

Although this week the PEG was removed and Darcy is drinking fluids out of a bottle like a champ.

As Darcy's fulltime carer, Julie's days revolve around his needs. A typical day before COVID-19 meant taking her son to school and then handing him over to his carer for activites such as bowling and basketball.

He'll then come home to relax and on weekends Julie takes him visiting family and friends or to the concerts he loves.

During the pandemic she says he has coped well will Zoom lessons and keeps active by taking every opportunity to play football at the local park.

"Dressing, bathing, brushing his teeth and eating dinner are the biggest challenges," she says. "He needs help with most self-care and daily living. But we are teaching him everything to make him as independent as possible."

At the moment Darcy is learning to open a drink bottle and fill it up himself, to drink from a cup and to turn the shower on himself.

"We're also working on getting dressed at the moment and he is good at the bottom half but jumpers and things like that are still a challenge at the moment," she says.

There are approximately 2.6 Australians currently caring for a loved one full time, including Julie.

She says while it can be difficult and even lonely, reaching out for support has helped.

"We've made a lot of friends in the Down's syndrome community and it helps," she says. "When you have a child with a disability you worry about their future."

Julie also works with Carers Victoria to provide support to other families caring for a loved one with a disability.

She advises carers to practice self-care as often as they can, something she does for herself.

"I like to try and go for walks and I've recently got into reading books," she says.

You can follow Julie and Darcy's journey at JulieFisher.com.au and by purchasing their book JulieFisher.com.au.

If you are a carer who is in need of support contact Carers Victoria or Carers Australia.