Oliver McCoombes

Oliver McCoombes

Oliver has Sanfilippo Syndrome. Luckily, his baby sister Maisy does not. Without treatment, Oliver will not live to adulthood. You can help children like Oliver by contributing to our campaign to raise funds for research into this childhood dementia.

Oliver McCoombes is full of endless energy, like any four-year-old boy. But unlike most four-year-olds, Oliver, aka ‘Ollie’, is battling Sanfilippo. His parents Catherine and Phillip describe Ollie as an "affectionate and very active little boy", so being told he won’t be like that forever, they say, "is one of the worst things a parent can possibly hear". 

Discovering that Oliver has Sanfilippo Syndrome was devastating. To go from having what we thought was just a developmental delay to having a terminal disease, a syndrome that will slowly rob him of everything, made our world come crashing down.

He’s such an affectionate and active little boy, so being told he won’t be like that forever is one of the worst things a parent can possibly hear. Oliver’s laugh and smile are infectious, and he’s always talking to everyone when we go out. 

Oliver is also a loving big brother to his sister Maisy. We often find him sitting down showing her a book or giving her a kiss and cuddle. When she crys, he checks on her and gets upset when she’s upset. It was of course a huge weight lifted off our shoulders when we found out that Maisy does not have Sanfilippo.

There's not a day that goes by that you don't think about Sanfilippo but at the same time we want to treasure the time we do have with Oliver and create happy memories.

We hope that the Sanfilippo Children's Foundation will help advance the science so a treatment and one day a cure can be found. Our hopes and dreams for Oliver are that we will get to see him grow up, and that he won’t have to suffer. Oliver deserves every chance at life.

Photography: Osyth Sanders

You can help

Make an online donation

Donating online is a fast, easy and safe way to donate for donors who would like to pay via credit or PayPal.

Host a fundraiser

There are lots of ways you can fundraise. We have plenty of ideas for you in our A-Z of fundraising ideas & you can set up your own fundraising page here

Follow Oliver's FB page here

A big thank you to our Supporters

The real heroes who are kindly helping us achieve our goal

Big W Redbank

Christmas Fundraising

$215

Nicci Mcneill

$2

La Toya Redman

You are incredible Ollie 💜

$53

Peter Arndt

$500

Silvia Carroll

With love and prayer to you

$53

Kathryn Robinson

Love, best wishes and hope to you all.

$53

Raceview Kcc

$767

Peter And Gloria

Much love from Nanna and Dziadzio.

$210

Debra Anne Craig-williams

thinking of you and your family

$53

Big W Redbank

HOPE FOR OLIVER morning tea fundraiser , work family.

$974

Catherine Mccoombes

Hope For Oliver shirt

$20

Catherine Mccoombes

Hope For Oliver Shirts

$419

Casey Rose

With Love from your RVKCC family

$844

Coogan

💞

$53

Anita Kasumovic

$26

Lorraine Coleman

$105

Anonymous

$1

Brenda

I pray a cure will be found very soon.

$26

Josephine Rose

Incredible family - much love to you all.

$105

Jasmine Crawford

$26

Jeff - Taxi

$105

Corey Mcelligott

$26

Sue Ellison

$105

Sheryl Travers Travers

$11

Anonymous

$263

Katelyn Hibben

$105

Kristie Foley

I wish I could do more. Sending so many positive vibes to all the families going through this. I hope there is a treatment found that can help

$26

Rita Toth

All my respect for all of these amazing mums. I wish I can donate more.

$26

Mummymetime

Our love and thoughts are with you all . Have shared your story from The project to make People aware of the help that is needed ❤️

$53

Aye Mon

$53

Elizabeth Cruice

$25

Megan Krawczyk

❤️

$11

Danielle Billington

$11

Jane Keating

Best wishes Ollie.

$16

Karen Collins

$53

Bree Hillsdon

$21

Claire Martin

$100

Carmie

I pray a cure is found soon for all these beautiful children...

$26

Richard Jones

$105

Anonymous

May the Lord heal and protect your gorgeous boy and family.

$50

Toby & Jana

$50

Paul

$32

Mel Bates

$21

Ian K

Hope this helps

$26

Anonymous

$53

Melissa Stoner

$21

Jl

For a world without Sanfilippo Syndrome.

$53

Ashlee Henman

$21

Anonymous

$105

Tracey Fleming

The strength of these parents is extraordinary and the love for their children boundless. My prayers, thoughts and heart are with you all and especially the precious earthbound angels. Hoping my donation is a small practical way in which I can help a mate. With deepest respect and admiration, Blessings, peace and joy, Tracey Fleming x

$53

Hannah Virgo-colbey

$26

Anonymous

$50

Anonymous

$53

Anonymous

$26

Melinda Achilles

I was so touched by the story on The Project and my heart breaks for all the families that have been affected by this condition. I hope my donation will help with research.

$53

Anonymous

$50

Evonny Lacaba

$11

Minish Britt

Beautiful Boy, hopefully with a beautiful future x

$25

Anonymous

$25

Denise Pleasants

Praying Jeremiah 33:3 & 29:11. In Jesus Christ sweet and mighty powerful name. Amen.

$25

Anonymous

$53

Tanya Bebic

$26

Anonymous

$105

Anonymous

Ollie's a proud big brother for sure...

$5

Martine Cashen

Stay strong ❤

$26

David Brennan

$105

Anonymous

Xx

$5

Stacey

Keep being brave ❤

$26

Carry Varley

Hope is eternal.

$105

Irma Djaya

$53

Chantrill

$26

Sarah Peachman

$26

Anonymous

$26

Rachel Burns

Best wishes for your beautiful families x

$26

Mark Owen

Let hope to find a cure

$11

Misty Gill

$53

Anonymous

$11

Liz Mellor

$26

Pauline Haddad

In my prayers 🙏

$21

Krista Angwin

$53

Edward Butler

$105

Shane Gregorgy

Good luck

$105

Anonymous

$20

Tanya Pearson

$53

Toni Pepper

$21

Kandese Butler

Sending the world of love and support your way x

$21

Nella Garrasi

Thank for for sharing this, building an awareness and setting up this action. You are truely an inspiration person and parent. Best wishes

$53

Nadia Cockburn-campbell

$53

Anonymous

$11

Kellie Longman

$26

Kate & Dan Mahar

Much love and strength for you and your kids

$21

Barnett

Best wishes with research for a cure to this cruel disease

$26

Raji Johnston

$105

Kate

$25

Candice

$26

Teresa And George

❤️❤️❤️❤️❤️❤️

$105

Anonymous

Much love prayers and strength to you all

$53

Janelle Crouch

$26

Lisa Ryan

I was inspired and moved to tears by your love and dedication for your children. That you still can find the energy to fight for a cure for others is inspirational

$53

Anjie & Bella

❤️❤️

$50