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Amelia the Brave

It’s a simple happy snap in the daycare playground. A three-year-old looks straight into the camera lens, her eyes crinkled with excitement.

Amelia’s perfectly white toddler teeth peek out from a wide, full-cheeked smile. Her waist-length brown hair has been tamed into two neat plaits. Perched atop play equipment, it is the epitome of childhood live-in-the-moment happiness.

But for the Nesci family, the photograph is so much more. It captures a moment in time, after which nothing would ever be the same.

Following this photo (right), Amelia suffered a month-long health deterioration and merry-go-round of doctors visits. What started as a suspected lingering daycare cold, ended 25 days later with her being carried – passed out – into the emergency department of The Royal Children’s Hospital.

She was then diagnosed with acute lymphoblastic leukaemia.

But instead of being a heartbreaking photo of good times and what might have been for parents Nadia and Anthony, the image of their darling daughter and second youngest child has instead been transformed into a positive project – children’s book Amelia the Brave.

This cartoon alter-ego has one mission; to give a child-friendly and gentle look into the world of childhood leukaemia.

Nadia’s original idea was to write a book and print one copy at Officeworks to help explain to Amelia’s daycare and kindergarten friends why she had suddenly disappeared.

More than 500 copies later and a second print run, plus the family’s fundraising efforts, will see them soon top $20,000 in donations to the Good Friday Appeal.

Amelia the Brave is not only spreading awareness that each day more than two Australian children will be diagnosed with cancer, it is also empowering Amelia to step up to this superhero role.

“When she was crying in those early days and asking, ‘Why me?’, all we kept telling her was, ‘You’re so brave, baby’. It just stuck,” Anthony says.

“With each hospital visit and each time she finishes her medicine, I think she believes the brave part now.

“Just with her demeanour and the way she carries herself, especially in the hospital now, she knows what’s expected, what’s going to hurt and what isn’t going to hurt.

“For her, at age four, to go ahead and do it the way she’s doing it, she is our hero.”

Amelia’s little brother, Marcello, had not long started daycare last year when lingering sickness entered the Nesci household.

No sooner than Amelia would get over a cold, another one would hit. But on May 1, she woke up with a stomach ache, one so bad that she couldn’t get up from the couch.

Anthony took her to the emergency department, where an ultrasound showed constipation was the likely culprit.

Amelia and mum Nadia

From that day, over the next month, her health declined. They saw five GPs in that time, with each suggesting a different diagnosis as varied as worms to an iron deficiency.

On May 25, Amelia – who by this stage was crying each day and a shell of herself – got a blood nose at 9am that could not be stopped. At 10am, they drove straight to the RCH. She fainted as she got out of the car. Barely two hours later the cancer diagnosis came.

“I remember asking one of the oncologists: ‘Are you sure? Is it possible that you may have made a mistake?’” Anthony says.

“I was just clinging onto something. It was surreal. I’ll never forget that day and I want to forget that day.”

The ripples of a cancer diagnosis reach far beyond just the child being treated and the parent who needs to be by their side in hospital.

Given cancer therapy typically takes several years to administer – even when everything goes to plan – a family often survives on begged and borrowed favours for everything from helping care for siblings, getting a meal on the table, looking after pets, and even paying bills.

For the Nesci family, it saw sisters and sisters-in-law step in to look after the other three children, a tough task given Marcello was just one when his parents and closest sister disappeared from his life for lengthy periods.

A fundraising drive by family and friends raised enough money to ensure Nadia could extend her maternity leave to be with Amelia.

It has meant relying on the generosity of Anthony’s workplace for extra time off, which allowed him to keep his family together and the household functioning while Amelia endured the most intensive treatment phases isolated in hospital.

Amelia and her parents Anthony and Nadia

A cancer diagnosis can also change relationships.

Amelia has always been a “Daddy’s girl”, with the family joking father and daughter had always been “joined at the hip”.

But after she got sick – like many children – Amelia only wanted her mum for comfort.

“That’s one thing that Anthony, still now, he struggles with,” Nadia says.

“She was angry a lot. She wanted me all the time. That was even weird for me. Because she was always with him previous to that. Now she’s come a long way, she’s back to being Daddy’s girl again.”

When Nadia would return home from hospital periodically during the first few months of treatment, baby Marcello would refuse to let go of his Mum.

Aaliyah, 11, still has weekly counselling. “She needs to vent and talk to someone other than us. There are always lots of questions,” Nadia said.

In the early days of diagnosis and treatment, Amelia refused to talk about it. It was her way of coping.

Her family needed to pick their moments, and find a way of being honest and upfront with what has happening, without overwhelming her.

Nadia read a children’s book to her about a boy who had leukaemia. This book sparked the idea that she needed to write her own version with a female lead character. But it was the page where the character loses his hair that made her daughter start crying.

“Amelia, because she didn’t understand the connection between cancer and death, she was more focused on the hair loss,” Nadia says.

“She was worried people would laugh at her for having no hair.

“Aaliyah was more focused on the death side of things. That was the first question she asked me: ‘Is Amelia going to die?’

“I remember there were a lot of tears and saying along the lines of: ‘We will do everything we can to make sure that doesn’t happen. That’s all I can promise.’

“I said, ‘I don’t know what’s going to happen’. At that stage we didn’t know what type of leukaemia it was, what genes were involved, because that makes a big difference in terms of the percentage of survival rate.

“Luckily Marcello has no idea. He’s too young. He won’t remember any of this.

“We’re very open and very honest with our kids, and we don’t sugar coat things and we don’t hide things. They are very aware of everything. I don’t want them to be surprised by things. The more they know, the better.”

THERE is a bright green sticker on the bag of IV liquid dripping into Amelia’s bloodstream that Nadia can barely look at. It makes her too furious.

“For intravenous use only,” it reads. “Fatal if given by other routes.”

And yet this chemotherapy – deadly if it enters the body another way – is Amelia’s lifeline.

A big driver for the couple’s fundraising and awareness raising is to see pediatric cancer treatments improve so they can be more effective and less toxic on little bodies.

“So much more needs to be done for childhood cancer,” she says.

“Our kids are receiving chemos and dosages that were created in the 1960s. It needs to change because so many children who have cancer aren’t even dying from the cancer, they’re dying from the chemo. It’s that toxic.

“There are significant after-effects of chemo. Amelia will need yearly heart scans until she’s 21. She’s only 4.

“Even though her treatment ends next year in August, we’ve got years of things ahead of us.”

CANCER may be a cloud that will continue to hover over the Nesci family for the foreseeable future, but they are still working hard to find the silver linings.

For Anthony, the experience has confirmed the importance of connecting with their four children.

“It’s made us stronger and tighter. I don’t want to do things with other people at the moment. I just want to keep everyone in my family within reach. That’s all I care about,” he says.

“It’s only the last couple of weeks we’ve had some family birthday parties. We declined Christmas and all family functions, and because we’re Italian there are a lot of events. We’ve done nothing in well over a year.

“It’s a little bit weird, and a little bit relieving to get out again now. The kids have loved it.”

For Nadia, cancer has confirmed to her what is important in life – people and memories.

“When childhood cancer happens, and I’ve discussed this with a lot of the other mums, you look at everything completely different,” she says.

“All the things that used to stress you out and worry over, when I say they mean nothing now, they really don’t.

“I used to get angry and frustrated when the kids would be on the kitchen table painting and making a mess, throwing things on the floor. I’d be frustrated at the cleaning that’s involved.

“Now I don’t care. Taking photos of them doing that, putting those paintings up on the wall, all of that is what matters.

“What matters is the people under this roof; everyone is happy and as healthy as they can be. Nothing else in this world matters, other than that. Cancer puts everything into perspective.”

What they’ve been through in the past year has also reinvigorated their drive to give back to the place that is treating their daughter.

“We’re doing this (telling our story) because The Royal Children’s Hospital saved my daughter. It’s as simple as that,” she says.

“We’ve been told if we didn’t bring her in that day she probably would have just another week or two left.

“All I kept thinking was thank God she got that blood nose, because we were just persisting at home trying to fix her ourselves because that’s what the doctors were telling us to do.

“They have saved my daughter. They continue to save her every day.

“The amount of the kids we’ve met now that they have saved, and continue to save every day, we owe that hospital everything – everything.”

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Matty’s Ride to Nanna’s

Matty may only be 9 years old but he has ridden his bicycle almost 300km to his Nanna’s place, all while raising more than $10,000 for the Good Friday Appeal.

He embarked on ‘Matty’s Extreme Ride to Nanna’s from his home in Yarraville last Thursday (April 14) morning and rode to Warrnambool with his dad Michael. The pair rode for six days, with mum Lia and sister Helena, as their support vehicle, arriving at Nanna’s in the afternoon on Tuesday.

Matty said his legs were tired after the ride but he was very excited to see his Nanna and give her a big hug.

Matty hugging his Nanna

The ride had been a long time in the making.

“It all started at least two years ago. I came up with the idea of riding my bike to Nanna’s. I hadn’t really seen her for a long time because of Covid,” Matty said.

Michael said at first they thought the idea would go away but it didn’t so then the family decided it would be an opportunity to do something good and raise funds at the same time as the ride.

“We luckily haven’t needed the hospital that much so far but just knowing it’s there is such a great thing as a young family. You never know when you’re going to need it. It’s always kind of in your thoughts that there are families there having real battles and that there are some miracles,” Michael said.

Michael said he was “extremely proud” of Matty for doing the ride and raising funds.

“We took it easy, we didn’t push it too hard at any stage. We had plenty of breaks and stopped at playgrounds and gave our legs a break.

“Matty was bouncing back better than me the first couple days. He never complained.”

The Good Friday Appeal thanks champion Matty and his family for raising an incredible $10,344 for The Royal Children’s Hospital – more than double the goal he set out to raise!

You can still view Matty’s fundraiser and donate.

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Sisters’ Christmas fundraiser

When the girls, who are aged just 11 and 9, were looking for something to do when they were bored during lockdown, they decided to make the cards, bon bons and gift stickers. They quickly decided they wanted to sell them to raise money for the Appeal.

“We wanted to do it because it’s a special cause,” Maddison said.

“Every dollar is something new for the kids there that can help them,” Ellie said.

The Royal Children’s Hospital holds a special place in their families’ hearts.

Their aunt was diagnosed with cancer at the Hospital when she was 8 years old and received wonderful care there until she died aged 13. 

After first setting a target to raise $120, the sisters have raised an incredible $1225 selling their Christmas products to family, friends, teachers and their school community.

Their school, Guthrie Street Primary School, got on board and the girls also started running a ‘guess the number of chocolates’ competition for $1 a guess for students. They raised another $270 from this.

Ellie and Maddison have enjoyed fundraising, filling their custom orders and seeing how generous their community is.

“It’s been quite fun. We like doing arts and crafts as well as fundraising for a nice cause. We got lots of orders for our fundraiser,” Maddison said.

“It’s been amazing. People have donated so much money. A quarter has been from donations,” Ellie said.

Story posted: Wednesday, 8 December 2021

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Full steam ahead for Appeal

Excited children and families once again enjoyed a scenic Good Friday train ride along the Bellarine Peninsula while raising money for The Royal Children’s Hospital.

The trains depart from Queenscliff Station every hour on Good Friday, and head along Swan Bay to Lakers Sliding.

All funds raised through the rides were donated to the 2021 Good Friday Appeal.

Bellarine Railway raises funds for the Good Friday Appeal. Picture: Mark Wilson

The Bellarine Railway has been a registered fundraiser with the Good Friday Appeal since 2017.

The Bellarine Railway is a not-for-profit organisation operated by volunteers whose objective it is to bring the heritage railway experience to people of all ages throughout Victoria.

The train route takes people through Swan Bay, one of the most diverse ecosystems on the Victorian coast with around 200 bird species that have been sighted in the area.

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Car show raises money for the kids

For the past decade, the Kruze 4 Kids Car Show and Family Day has been a fixture on the Good Friday fundraising event calendar.

Since it began in 2012, the event, held in Sunbury, has raised $76,479 for the Good Friday Appeal.

The event was the brainchild of Bradley Radclyffe, who was diagnosed with type 1 diabetes when he was aged 7. It brings together hundreds of people showing their cars and bikes, as well as families enjoying the show, face painting, stalls and more.

Tahlia,3 in front of her favorite car at the show in 2013

Bradley spent much of his childhood at The Royal Children’s Hospital and wanted to help make a positive difference for other kids treated at the Hospital.

He was passionate about motorsport and brought together his love of cars and desire to raise funds for the RCH to create the family fun day.

Bradley sadly passed away in January 2020 and his father Alan Radclyffe and their family are continuing Bradley’s legacy through Kruze 4 Kids.

The 2021 event raised an incredible $31,240 for the Appeal and the family are already making plans for future fundraising and events to continue supporting the Appeal.

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Dog club rattles tins for the kids

In the winning combination stakes it’s hard to go past kids and animals.

So, it’s no surprise the German Shepherd Dog Club Victoria and the Good Friday Appeal have had such a successful relationship over the past 37 years.

Bernie Lester has been involved in the club’s fundraising efforts for the Royal Children’s Hospital since they started in 1983.

“At the time I did not have any connection with the hospital but having two young daughters I wanted in some small way to be involved in raising money so that if my girls ever needed the best medical care they, along with all other children, would have access to the best equipment a hospital could have,” Bernie said.

“So, I asked the German Shepherd Dog Club to be involved in fundraising for the Good Friday Appeal.” 

Each year the number of club volunteers involved in the Appeal varies, but there are usually about 50 out rattling tins on Good Friday.

Dog club volunteers Ethel and Karen doing a roadside collection on a previous Good Friday.

“In the early days our dogs would be with us but in 1997 because of some changes to the law our dogs were not permitted to be on the corners with us anymore,” Bernie said.

The dogs were also a feature of Good Friday festivities when the collection centre was the HWT office in Flinders Street and the German Shepherd owners put on popular demonstrations to showcase their dogs’ skills.

Although the involvement has changed over the years, the club is looking forward to being involved in fundraising activities for next year’s Appeal.

“We believe that sick children should have the best care and it gives us a lot of satisfaction at the end of the day,” Bernie said.

The group has raised more than $600,000 for the Appeal since 1983.

First published 30th September, 2020
Words: Tricia Quirk

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