Ava the Rare Metabolic Warrior

Good Friday Appeal 2025

Give for the kids!

Join me for the Good Friday Appeal. 



Will you help me and do something really GOOD for sick kids?

I'm giving it my all to raise funds for the Good Friday Appeal this year. Why? So The Royal Children's Hospital can continue to provide the world-class care to seriously sick children and their families.

Please give generously. I've set a goal to raise as many funds as possible because this is our chance to make a brighter future for all kids.

Every dollar you give will help fund state-of-the-art equipment, groundbreaking research, staff training and patient care.

There have been SO MANY kids who have had life-saving care at The 
Royal Children's Hospital. I need your help to make sure that kids can keep getting that special care this year, and the next… and the next.

I need your support to reach my fundraising goal and to help as many sick kids and their families as possible, please donate today.Β 

Iβ€˜ve created this page because I want to make a difference to the lives of sick kids.

The Good Friday Appeal relies on the support of the community to raise funds to ensure that The Royal Children's Hospital is able to continue to provide world class care to patients and their families. From 2022 to 2023 at The Royal Children's Hospital: 90,260 patients presented to the Emergency Department, 50,345 children and young people were admitted to a ward, 407,563 children and young people attended an outpatient appointment, and 14,963 patients underwent surgery.Β So please help by giving whatever you are able to this fundraiser and help spread the word by sharing this page with your friends, family and networks. Thank you for your generosity, it means a lot!

with heart

My Updates

Why am I continuing my fundraising efforts?

Thursday 13th Mar
The biggest WHY?
Because I wouldn’t be here without the Royal Children’s Hospital.

They were the ones who told me I was β€œsick”.

I was fortunate enough not to present to emergency so unwell that I needed to tests to find out what was wrong with me.
I was diagnosed with my Rare Disease, via the newborn bloodspot screening test AKA the heel prick test.

Although absolutely terrifying for the family to be told of this disease, we were so glad we were placed into emergency care, educated from the beginning, airlifted immediately to Melbourne by PIPER and commenced our journey with the hospital.
Mum and Dad were able to stay at the hospital and be with me as often as needed at any time of the day or night.Β 
This alone, is a reason why I am giving back.

After being discharged right before my very first Christmas and reunited with the rest of my family, I was then on weekly blood tests from Shepparton. These samples were taken in the morning, separated, frozen and couriered to Melbourne all in the same day.
Again, At the expense of the Royal Children’s Hospital.

I continue to have these blood tests, monthly not weekly.Β 
At the expense of the Hospital.

I will forever owe my life and childhood to this hospital.

They help so many of us, especially in rural Victoria, to get the help and medical treatment we need, with world class care and treatment.

This is my why.

This is why I will flood Mum’s facebook feeds with requests for donations.
Because today you might not be able to donate, but next week you might.

No matter the size of your donation, every little bit helps.

Thank you so much.
Love Ava 🌸

Rare Disease Day February 28th

Friday 28th Feb
Today is Rare Disease Day.

We got to celebrate at school by raising funds and wearing bright coloured T-Shirts.
I walked around the classrooms and told them all about my Rare Disease and that all the money was going towards the Good Friday Appeal.

We Raised over $300!!!! I am so excited and so thankful to everyone who brought a donation and to those who have donated on my page.

Thank you so much!!!Β 

β€œMore than you can imagine”

Ava 🩷

THANK YOU….. So Far

Tuesday 25th Feb
Wow, I am absolutely amazed by the generosity of my family and friends.
I had set a target of $500. I was able to increase this target to $1000, then $1,500 and now I have been able increase my goal again to $2,000.
I am so excited to make a valuable difference to the hospital and care team that continues look after me and who have, since I was 16 days old.
I can’t wait to share some very exciting news about my role on Good Friday…. Coming soon….

Until then, THANK YOU from the bottom of my heart for every single donation. I am beyond excited.

Love Ava x

Regional GFA ambassador

Tuesday 11th Feb

Day of diagnosis

Tuesday 11th Feb

Our Story

Tuesday 11th Feb

Like any lively six-year-old (now 7), Ava Rees loves chocolate.

But she knows more than a small bite at a time could lead to permanent brain damage.

β€œAt Easter, I can’t have chocolate Easter eggs,” the grade 1 (2) student said.

β€œIt could make my brain go silly and make me go to hospital and die.

β€œIt just makes me upset because I can’t have chocolate, milk and lots of other stuff that’s yummy.”

Ava, from Numurkah in the Goulburn Valley, was born with a genetic condition called Maple Syrup Urine Disease that is so rare it affects only one in 150,000 children.

She must follow a strict low-protein diet for life: no meat, no dairy, limited gluten.

Ava has been a patient at the Royal Children’s Hospital since she was a newborn, after her disease was detected by a routine heel prick test.

Mrs Rees was told to rush Ava into Shepparton Hospital’s emergency department, from where she was flown to the Royal Children’s in Melbourne.

β€œThe diagnosis was horrible; the first 12 months was horrible,” Mrs Rees said.

β€œShe has to be on a very strict low-protein diet or she can get brain damage.

β€œAbsolute worst case, if she went off diet, she’d be very ill and end up in a coma. So it’s very, very serious, but easily managed.”

From when she was tiny, Ava learned to say, β€œI can’t have that because it will hurt my brain.”

The name for the disease stems from a symptom – people with maple syrup urine disease can have sweet-smelling urine, similar to maple syrup, when they getΒ ill.

Ava has a weekly finger prick blood test to check her amino acids, and her diet is tweaked accordingly.

But Mrs Rees said after sending the sample to the Royal Children’s, it took a week to get the results.

Mrs Rees hopes the Good Friday Appeal’s expansion of funding to regional hospitals could mean Ava’s blood samples can be tested locally.

β€œIf we can get results the same day, it would mean we could potentially play around with her diet,” she said. β€œBut we can’t risk that now.”

Written by Jen Kelly
Published in the Herald Sun 09/02/2024


Recent Donations

$106.12

Robyn Coonan

Great job Ava ❀️

$33.15

Kristy

Good job Ava

$33.15

Rob & Jodie Small

$33.15

Kelley Horan

Thinking of you

$30

Louise Shannon

Well done Miss Ava

$22.58

Wendy Drew

Good on you Ava. Good luck.x

$100

Andrew And April Macdonald

Ava you're a superstar!

$54.12

Amber Barry

Good on you! ♥️ What a great cause.

$22.58

The Muck Clan

Your once amazing little human xo

$64.67

John Miller

Strong and beautiful Warrior. We are right behind you. Love from Aunty Jenny and Uncle John. X

$22.10

Brooke

Woohoo you go Ava such a warrior

$20

Kerrie Chapman

$54.12

Tyrepower Wodonga

$30

The Bloodworths

$30

Stacey Dick

$54.12

Lisa Holdem

Big Love from the Tassie Crew xxx

$22.58

Vicki Brown

$33.15

Margo

$106.12

Janine Thorp

Go Ava. You are a superstar πŸ’«

$59.41

Ian And Vicki

GREAT WORK AVA. Good luck with you fund-raising.

$39.35

Letoya Jones

$33.15

Nicola, Ollie, Erin & Oliver Xx

Go Ava !

$11.65

Bec

Great work Ava! You are getting close to your goal ⭐️

$54.12

Marg Brown

$22.58

Kylie Botterill

Hoping that one day tests can be regional for Ava 🀞🏻

$22.58

Anonymous

$33.15

Rawso

$33.15

Luca Delaney Gonzalez

Almost there! πŸ™ŒπŸ½πŸ’ͺ🏽

$106.12

Dunkinway Tyrepower Cohuna

$22.58

Kim Mcpherson

Great work Ava!

$33.15

Bronwyn Carland

$106.12

Hendy’s

Superstar

$13.15

Abbi Harris

Great job Ava! Love Pippa

$106.12

Courtney Ireland

Love the Irelands, we hope you get to your goal Ava!!

$54.12

Evie Clurey

Good job Ava!

$42.64

Sophie And April Caccianiga

Go Ava ❀️

$33.15

David Delaney

Good work Ava you are superstar

$10

Kellan Lynch- Rees

$22.58

Em & Nat

Onya Ava!

$119.15

Claire Ives

You are such a little trooper and so brave - go Ava

$106.12

Ashleigh Mayberry

$320.83

St Joseph's School Numurkah

$38.33

Nanna And Grandpa

Well done little Rocket

$54.12

Anonymous

Ava , It’s My pleasure to help ❀️. My son Mitch spent some time at the children’s hospital when he was 10 year old. They helped him . He went to school and lived near with your mummy , aunty Shannyn and uncle Cody . Good luck , you are doing an excellent job. Leonie xx

$22.58

Fiona

$208.60

Annemaree Mayberry

$22.58

Marg Paulo

Good luck hope you do well xx

$100

Erin Reghenzani

$50

Mikayla, Blayze & Kehlani

Go Ava!!!

$100

Tanya

You’re a superstar Ava πŸ’ͺ🏼😍

$17.16

Mary And Colin

Just for you Ava 😘

$11.65

Joe And Gail Imbesi

Thinking of you and your precious family Ava xxx

$106.12

Nicole Reade

You and your family are amazing Ava! πŸ‘

$54.12

Heather Limbrick

$11.65

Burkitt Family

You’re a little champ Ava!

$106.12

Fiona And Barry

So much love, so well done

$6.13

Bec And Boys

Hope you get your $48 in 48 hours Ava. Good luck xx

$54.12

Sandy Hunt

Doing it for the kids

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Online Funds raised over the years

$ raised since 2024