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
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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
A big thank you to our Supporters
The real heroes who are kindly helping us achieve our goal
Peter And Gloria
$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
Julie Sullivan
Heartbroken for all affected, hoping a cure is soon <3
$26
Gatt Family
$210
Jason
❤️
$53
Catriona Kucks
$26
Anonymous
Hoping this small amount helps towards the research needed xxx
$53
Geraldine Timcke
$53
Mary Brewer
$21
Much love from Nanna and Dziadzio.